In Brazil, donor anonymity is mandatory; however, the tendency of Brazilians towards the practice is unknown. In this study, an attempt was made to investigate whether couples undergoing assisted reproductive technology (ART) have a different perception of anonymous versus identity-release gamete donation than a target population in Brazil.This cross-sectional study was performed from September 1, 2020 to December 15, 2020. For that purpose, surveys through online platforms were conducted, including either patients undergoing ART  or subjects interested in the theme  randomized by age at a 1:4 ratio. The survey collected information on the participants’ attitudes towards anonymity of gamete donors, and answers were compared between the groups.Most participants stated that the relationship between children and their parents would be affected by the child’s knowledge of the origin of its conception. Most participants in the ART-group believed that the gamete donor’s identity should not be revealed to the child, while only half of the interested-group stated the same. Most of the participants stated that “the donor’s identity should be revealed if the child questions its biological origin”. “From birth” was the second most common response, while “when the child turns 18 years old” and “sometime during teenage years” were less common answers.The attitudes of ART patients about anonymity are conservative, with most participants believing that family relationships may be affected if the child is aware of the origin of his/her conception. These patients also believe that the identity of the gamete donor should not be revealed to the child. Gamete donation is a well-established treatment in ART . Sperm dOver the past years, fertility treatments using donated oocytes have widely increased, and not only are a large number of children born following donor conception , 6, but Donor conception has traditionally been performed with anonymous donors ; howeverCurrently, legislation concerning whether donor conception should be anonymous ranges from mandating donor anonymity in some countries, such as Brazil, to prohibition of anonymous gamete donation in others. In some countries, such as Japan, there is no statutory law regulating ART or third-party reproduction . In one Legislation on identity-release gamete donation was first introduced in 1985 in Sweden , and curIn Brazil, the last resolution of the National Health Surveillance Agency (ANVISA) published in December 2022, determined that confidentiality of all information relating to the sample to be used must be respected. The assisted reproduction center is responsible to preserve the confidentiality of documents and records involving gamete donors .Since the 1990s, a growing debate about whether donor-conceived people should have a legal right to access information about their donor has been observed; yet a shift in attitudes towards a more open view has emerged which argues that donor-conceived people should be told about the way they were conceived and they must have access to information about their gamete donor –18.It has been argued that identity-release gamete donation protects the offspring’s interest in knowing their genetic heritage, securing accurate information about potential health problems, and making future medical decisions. In contrast, those who defend anonymous gamete donation state that donor anonymity protects offspring from potential negative consequences for family relationships if the truth is revealed .There are few publications comparing disclosing and nondisclosing families, and apart from some conflicts observed between mother and children among these families , parent-Although there is a rich body of literature on the discussion about anonymous or identified gamete donation, there is limited knowledge of patients’ attitudes towards disclosure issues, especially in countries where anonymous donation is required by law. It is also unknown whether the assisted reproduction treatment, and its physical and emotional implications could influence the opinion of individuals regarding donor anonymity.Therefore, the goal of the present study was to investigate whether couples undergoing infertility treatments have a different perception of anonymous versus identity-release gamete donation than a target population in a country (Brazil) where anonymous donation is required by law.This cross-sectional study was performed from September 1, 2020 to December 1, 2020, in which surveys were conducted through online platforms, including either patients undergoing ART  or those interested in the subject who accessed the website of a university-affiliated IVF center . Participants were randomized by age, in a 1:4 ratio, into one of the two groups. Those in the ART group were invited via e-mail, with a cover letter outlining the survey and a link to access it, and participants in the interested-group obtained the questionnaire via a website. The survey collected information on demographic characteristics and participant attitudes towards anonymity of gamete donors, and answers were compared between the groups.This study was approved by the Faculdade de Medicina de Jundiaí, Institutional Review Board, and participants provided the con-sent for publication of questionnaire data.i) In the case of children conceived through ART, do you believe that revealing the method of conception may affect the relationship between children and their parents?Response options: “Yes, it may affect the relationship with their parents” or “No, it wouldn’t affect the relationship with their parents”.ii) In the case of oocyte donation, if the method of conception is revealed, do you believe that the child has the right to know the oocyte donor? Response options: “Yes, the child has the right to know his/her origin” or “No, the child should not be told”.iii) If you had to reveal the identity of the gamete donor to your child, when do you think that the identity of the oocyte donor should be disclosed? Response options: “the oocyte donor’s identity should be revealed if the child questions its biological origin”, “the oocyte donor’s identity should be revealed since birth”, “the oocyte donor’s identity should be revealed when the child turns 18 years old”, or “the oocyte donor’s identity should be revealed sometime during teenage years”.iv) In the case of sperm donation, if the method of conception is revealed, do you believe that the child has the right to know the sperm donor? Response options: “Yes, the child has the right to know his/her origin” or “No, the child should not be told”.v) When do you think that the identity of the sperm donor should be disclosed?Response options: “the sperm donor’s identity should be revealed if the child questions its biological origin”, “the sperm donor’s identity should be revealed since birth”, “the sperm donor’s identity should be revealed when the child turns 18 years old”, or “the sperm donor’s identity should be revealed sometime during teenage years”.The questionnaire contained questions regarding demographic data. Participants were asked to provide information about age (open response format), professional activity (open response format), and marital status . There were three more questions regarding their perceptions concerning the anonymity of gamete donors:vs. 21  statistical program. Variables were tested for normality distribution and group homogeneity using the Shapiro Wilk and Levene’s tests, respectively. Age was compared between the groups using Student’s t-test, while other variables were compared using the Chi-square test. Age was described as the mean±standard deviation, and the other variables were described as the percentage±standard deviation. The considered significance level α was 5%.Data were analyzed using the SPSS Statistics vs. 36.9±6.3, p=0.076, for ART-group and interested-group, respectively, vs. 82.7%, for ART-group and interested-group, respectively, p=0.868, There was no difference in age of two groups .When asked if the sperm donor should be identifiable, most participants in the ART-group answered that the sperm donor identity should not be revealed to the child, while only half of the interested-group stated the same . “From birth” was the second most common response , while “when the child turns 18 years old” , and “sometime during teenage years”  were less common answers  argues for the right of the child to be informed about the origin of his/her conception and about the donation . In factWhile donor anonymity was the rule in most countries in 1990s, identity-release donation is nowadays mandatory in at least 14 countries . At the In our study, among participants who stated that the children should be informed about their genetic origin and that the gamete donor should be identifiable, most were unsure about suitable timing for disclosure. One-third of them answered that the donor’s identity should be revealed if the child questions its biological origin. The second most common response was “since birth”, while “when the child turns 18 years old” and “sometime during teenage years” were less common answers.When children who were conceived through gametes from identity-release donors grow up, parents need to deal with the question of disclosure to the child. In fact, in a previous report from Sweden, it was observed that as children grow older, reaching an agreement about what to tell the child concerning donor conception might be a source of stress in parenthood . It has It has been reported that a common age for disclosure to donor-conceived children is when they are approximately 5 years old , 33, 41.The perception that the child is too young and needs to reach sufficient maturity to understand donor conception is a commonly reported reason to postpone disclosure , 47. In Lack of adequate opportunities to conduct face-to-face interviews and lack of knowledge of the real condition of the website participants concerning infertility or being involved in ART may have biased these results. While there is a movement in favor of a more open approach regarding disclosure of donor identity which is inspired by the United Nations Convention on the Rights of the Child  in many Despite the global tendency towards identity-release gamete donation programs, donor anonymity is still mandatory in Brazil, and attitudes among ART patients seem to be more conservative, with most participants believing that family relationships may be affected if the child is aware of the origin of his/her conception. In addition, these patients believe that the identity of the gamete donor should not be revealed to the child. Participants interested in ART seem to have an open-minded view; however, if facing the problem, future parents’ intentions to disclose may not be borne out in practice. Finally, despite the children’s right to know their biological origin, disclosure of the donor conception to offspring remains a challenge for many of parents.


Pre-existing racial/ethnic disparities in health, sustained by intersecting socio-economic and structural inequities, have widened due to the COVID-19 pandemic. Yet, little attention has been paid to the lived experiences of people in ethnic/racialised minority communities, and to the causes and effects underlying the COVID-19-related burden. This hinders tailored responses. This study explores Sub-Saharan African (SSA) communities’ needs, perceptions, and experiences of the COVID-19 pandemic and its control measures in Antwerp (Belgium) in 2020.This qualitative study using an interpretative ethnographical approach adopted an iterative and participatory methodology: a community advisory board advised on all stages of the research process. Interviews and a group discussion were conducted online, through telephone, and face-to-face. We analysed the data inductively using a thematic analytical approach.Our respondents, who mostly used social media for information, struggled with misinformation about the new virus and prevention measures. They reported to be vulnerable to misinformation about the origin of the pandemic, risk of infection with SARS-CoV-2, and the prevention measures. Not only did the epidemic affect SSA communities, but to a larger extent, the control strategies did—especially the lockdown. Respondents perceived the interaction of social factors  and economic factors  as increasing the burden of COVID-19 control measures. In turn, these experiences influenced people’s perceptions and attitudes, and may have partially impaired them to follow some public health COVID-19 prevention guidelines. Despite these challenges, communities developed bottom-up initiatives to react quickly to the epidemic, including translation of prevention messages, food distribution, and online spiritual support.Pre-existing disparities influenced the perceptions of and attitudes towards COVID-19 and its control strategies among SSA communities. To better design support and control strategies targeted to specific groups, we need to not only involve communities and address their specific needs and concerns, but also build on their strengths and resilience. This will remain important in the context of widening disparities and future epidemics. The COVID-19 pandemic has affected people around the world unequally. There is growing evidence that pre-existing racial/ethnic disparities in health, sustained by complex socio-economic determinants and structural inequities, seem to have been widened by the COVID-19 pandemic , the UniTo understand the linkages between social, racial, and health inequalities among racialised and other marginalised groups, it is useful to adopt an intersectional lens. The term ‘intersectionality’ has been used since 1989 to describe how race, class, gender, and other individual characteristics ‘intersect’ , and howDespite this evidence about increased health disparities, there is limited knowledge about communities’ lived experiences and attributions about these problems, and to the web of causes and effects underlying COVID-19-related suffering. This hinders true engagement with communities and co-creation of strategies to address health disparities and emerging problems.Belgium was heavily impacted by the first wave of the COVID-19 pandemic, with 30,014 COVID-19-related deaths between March and May 2020 . Within We conducted this study to explore local needs, perceptions, and different experiences of the COVID-19 pandemic in Antwerp city from the perspective of SSA communities in Antwerp. The study particularly aimed at exploring the lived experiences of COVID-19 and the prevention and control strategies, and to examine coping strategies against these measures. Findings from this study may inform future responses to epidemic/pandemic outbreaks while considering input from racialised and ethnic minorities in order to understand and address the intersecting factors causing their vulnerabilities.This qualitative study was part of a larger rapid assessment at the start of the COVID-19 outbreak in Antwerp among several racialised and ethnic minorities including SSA communities, Moroccan, Syrian, Turkish, and Orthodox Jewish communities. Detailed findings from the Orthodox Jewish communities  and issuTwo rounds of data collection took place in SSA communities: the first from April to June 2020, during the first COVID-19 lockdown period and the second from August to September 2020, during a local resurgence of SARS-CoV-2 infections in Antwerp city. We employed convenience sampling to recruit study participants from networks of SSA socio-cultural and faith-based organisations involved in the HIV prevention field. Through these networks, we selected key persons, influential community members, and volunteers with the HIV/STI-prevention network—HIV-SAM.Data were collected by CD, LM, and DK, who are experienced in working with SSA communities in the HIV prevention field. We used adapted topic guides for the semi-structured interviews and the group discussion (GD), focusing on accessing information, risk perception, beliefs about and perceptions of COVID-19 pandemic, knowledge of prevention measures and coping with them, and experiences of the effects of the lockdown and COVID-19 prevention measures. We conducted the first 19 interviews and the GD digitally using the researchers’ professional and protected Zoom account, or through telephone. We conducted two additional face-to-face interviews when restrictions were gradually relaxed while respecting COVID-19 prevention measures. We collected all data in English and/or French. We audio-recorded 16 out of the 21 interviews and combined these recordings with the researchers’ notes into extensive summaries. Five interviews and the GD were not recorded due to privacy concerns or technical problems. For these, we took extensive notes and made summaries.We analysed the 16 transcribed interviews, notes of unrecorded interviews, and summaries inductively using a thematic analytical approach . After fThe study received ethical approval (IRB ref. 1391/20) of the Institutional Review Board (IRB) of the Institute of Tropical Medicine (ITM), Antwerp, Belgium.n = 13), Burundi (n = 2), Cameroon (n = 2), Eritrea (n = 1), Ghana (n = 2), Guinea-Conakry (n = 1), Nigeria (n = 2), South Africa (n = 1), Somalia (n = 1), and Uganda (n = 2). The majority were male, highly educated, and Christian. Other socio-demographic characteristics of participants are outlined in Table Study participants came from the Democratic Republic of the Congo n = 3, BurundWe identified six main themes grounded in the data, and grouped them as follows: (1) sources of information on COVID-19 and perception of its origin; (2) knowledge of and adherence to COVID-19 prevention measures and risk perception; (3) attitudes towards COVID-19 testing, COVID-19 patients, and future vaccination; (4) collateral negative effect of lockdown measures; (5) community engagement during the COVID-19 crisis; and (6) the intersecting migration-related, social, and economic disadvantages and their impact on people’s attitudes towards COVID-19 prevention measures. As a last and separate point, we report on participants’ recommendations on context-specific and culturally-relevant responses to COVID-19.Participants explained that members of their communities used various media channels depending on language, affordability, and trust in these sources. Many people from the SSA communities used social media, a few watched mainstream television, while others relied on word-of-mouth.“They trust most in the information that they get from us [religious leaders] when they get it on Facebook or WhatsApp groups… it’s the most trustful information for them.” Social media was widely used as a source of information and space for social networking . WhatsApp was the most popular platform because of its affordability and user-friendliness, allowing for quick dissemination of information. People believed in the provided information mainly when they trusted the sender and network:Participants also admitted that social media facilitated the spread of ‘fake news’ and conspiracy theories. They feared that misinformation could mislead people and discourage them from adhering to official public health guidelines on COVID-19 prevention, as two respondents explained:“They believe that Corona is created in a laboratory and by politicians and therefore better to be informed by WhatsApp, the internet, and other media channels that oppose the system […].” “This [misinformation] is the biggest challenge, lots of false information are shared online, for example, that African people will be used for experiment purposes. This makes people afraid even to go to see doctors when they feel sick.” Furthermore, participants felt that misinformation aggravated the fear and anxiety that people were already experiencing. Frequently-mentioned conspiracy theories were blaming, among others, China, Bill Gates, pharmaceutical companies, Western politicians, and governments to have caused the outbreak. The following examples highlight some opinions on conspiracy theories that many people believed in:“I mean, there are even racist conspiracy theories or thoughts, that people think that it [COVID-19] was created, you know, to kill off some races and no other races, there’s even ageism where they are saying that it was designed to kill off the old and the weak and as a biological weapon.” “They say that it (COVID-19) is a disease that does not attack Black skin but when you look at what is happening in France, there is the number of Congolese who have succumbed to the pandemic. They say that it is the white people who kill them to take their organs and sell them. This information is spread by social media platforms and [some] African television and everyone tends to believe it.” “… There’s also [a belief] that it’s created by China to take over the world.” “Most of the people you meet will tell you that it is God who is angry, we have done a lot of stupid things and God is punishing the world.” “In my opinion, people are lost, I am lost too. We hang on to social media to get information but we do not master it [the information] because some are contradictory […].” Other participants expressed their struggle with information overload emerging from social media and the difficulty they faced to handle it:“Yah, because they don’t speak the language [Flemish], it is very hard for them. So, they always listen to the BBC Somalian news […] because they know it is based in London, they are very satisfied of getting accurate news.” Few people who got information from television reportedly watched BBC, CNN America, and the Francophone Belgian and French television channels. Others got information from online television channels from their countries of origin. The Flemish-language television channels were less watched. The following quote illustrates how language and trust determined the choice of TV channel:In general, participants rated knowledge about COVID-19 prevention measures among their fellow community members as high. Many people were believed to be aware of the severity of COVID-19, and reported that people in their communities tried their best to adhere to the prevention measures:“I think that during this pandemic, everybody knows what they must do. […] We thought we have to take care of our lives. […]. We have informed each other, and I think that everyone understood the importance of this.” “In general people are informed that there is a virus that is killing people and how we can avoid getting it…, [for example] we are no longer going for night prayers, although missing this causes lot of isolation and depression.” “There are those who are well-informed but who trivialise the information and those who are ill-informed because of their environment, to which religious beliefs are part…” However, cases of limited knowledge and trivialisation of the epidemic were also reported:Although most people reportedly understood the importance of the imposed prevention measures, some encountered barriers to adhere to them. Two specific challenges were highlighted, namely crowded homes and difficulties to refrain from social contact:“These [prevention measures] are difficult for us. This is mainly due to small spaces we have. We live on top of each other. Those with two or three children have it very difficult.” “Yeah, according to the culture and tradition, this is the most difficult moment for [X]2people, because it’s difficult to keep away from other people, they are very social, […] and shake hands and hug a lot.” “When they come to [X social integration centre],3 they must wear a face mask, but they [still] come to hug me because they haven’t seen me for so long. During the lockdown, they only heard my voice. So, they came sometimes from behind and hugged me […] ‘Ah, [they said] we don’t care about corona. We must give you a hug, [because] we missed you’.” “We Africans are stronger, for example, we support malaria and other diseases.” Regarding risk perception, people had opposing views on the potential risk of acquiring COVID-19. On the one hand, some thought that they were not at risk of contracting COVID-19 because of a predisposition linked to their African origin:This idea, which was reinforced by stories on social media, was strongest at the early phase of the pandemic but faded as the pandemic evolved:“At the beginning, there was a wrong belief that Africans cannot be affected by the virus.” “People used to say ‘this is a European disease; it doesn't concern us’. However, the more the pandemic evolved, the more they started seeing that it affected Africans as well, but at the beginning, they didn't take it seriously.” “I know, it [COVID-19] is not only for Black people, but for White people as well, but there are still people with this mentality that ‘I can’t get it’.” On the other hand, some people considered themselves equally at risk like any other person in Belgium:“The most effective remedy for this virus is testing. If we test everyone, then you will know. There will be transparency, you will know the state of your body.” In general, respondents reported that people accepted COVID-19 testing. However, during the first wave, testing was accessible only to people with symptoms. Participants questioned this limitation:“I think that [X]4people will hide [from testing] if I consider the current debate on vaccines. They think that the idea behind screening is to test the vaccine on Africans everywhere as guinea pigs. They won’t accept it [the COVID-19 test].” Targeted testing was not seen as a favourable option because participants considered it discriminatory and potentially stigmatising:“People are afraid of screening because they ask themselves: ‘what's next?’ […] We think there is a Machiavellian plan behind it, many people will refuse it. It is believed that the virus was man-made and there are doubts about the current approach. Screening motives are not clear, and the question is: ‘after the screening, what will happen?’.” Despite this relatively positive attitude towards generalised COVID-19 testing, hesitancy was also noted due to misinformation on social media. Rumours were circulating, for instance, that some COVID-19 tests were contaminated. Other people suspected a hidden agenda behind testing and fear of targeted testing was alluded to as a potential factor of stress and anxiety during that period:“Personally, I think it [contact tracing] is good because you have to protect others [...]. I think they [people] understand it because the disease is very contagious. You have to protect the society.” Opinions on contact tracing were diverse and sometimes contradictory with those expressed on COVID-19 testing and its acceptability as a future mass test. Some participants thought that contact tracing would be beneficial in stopping the spread of COVID-19, as one respondent noted:“I don’t think there’s a need for large scale testing and case finding (contact tracing) […]. I think that ship has sailed, and if we start doing it now, what are the reasons behind it […].” Others did not trust contact tracing because they feared it would intrude their privacy and because they also suspected a ‘hidden agenda’:A recurring narrative in the interviews was the potential stigmatisation of COVID-19 patients. Participants reported different experiences on this matter. On the one hand, people cured of COVID-19 were accepted and supported, on the other hand some also reported cases of stigmatised patients due to fear and uncertainty about this new disease:“Normally, when you have been ill [of COVID-19], everyone must avoid you, even if you are cured. But there are testimonies that people [those who have been cured] make and these give a bit of hope and are encouraging.” “When this thing [COVID-19 pandemic] started, there was one of our members, an elderly man, about 73, who called me. He was coughing and went just for a routine check-up, because he is diabetic. They had to quarantine him at the hospital. Somebody heard that he was in the hospital and was tested for COVID-19, and people were scared to meet him.” .COVID-19 vaccines were not yet available at the time of data collection, but we wanted to anticipate their future acceptability among SSA communities. Respondents reported three opinions: outright rejection, hesitancy, and relative acceptability. Anticipated rejection of the vaccine was particularly fuelled by the controversial proposal of two French physicians, who had suggested that a COVID-19 vaccine should first be tested in Africa because of the perceived high exposure to COVID-19 . Partici“It will be a complicated situation given thousands of negative statements about the vaccine on black skin. I myself, speaking to you, will not accept. There are some who are talking to create buzz in our social networks but there are also trusted people who are warning Africans not to accept any COVID-19 vaccine. Why should we accept?” “People won't accept it [the vaccine] because they think they are going to be injected with a chip that will expose them to be watched wherever they are […]. But they think it will be imposed on us, for example, at the airports.” “The vaccine can be accepted but with hesitation. It can, however, be accepted if leaders do it first in public. Community leaders will have an important role to play because people trust them. So, community leaders should be convinced to take the vaccination first.” Participants who anticipated vaccine hesitancy among community members, but who were in favour of the vaccine, argued that people needed to be convinced. They highlighted that community leaders should be involved in the process because people trusted them:Participants agreed that people in their communities had suffered a heavy toll from the collateral damage of COVID-19. They felt that COVID-19 negatively impacted people’s lives in different ways, including economic and psychosocial consequences, both individually and collectively. Participants considered the economic impact as the most severe. Several respondents reported that many people in their communities worked in the informal sector or on short-term contracts and were therefore unable to apply for formal financial support installed by the government. Moreover, since short-term contracts were not possible during the lockdown and opportunities for informal work had decreased, survival for these people became more difficult:“For migrants, especially those without papers, corona is a catastrophe, a threat to survival. There is a big effect on income, even for employed people.” “My experience is positive […]. But I have papers, those who don’t have it [paper] is another story because they cannot go anywhere [out]. Lucky enough nobody has been infected [by COVID-19]. I have not heard any plan to help people without papers. If another outbreak comes, they should say that anybody regardless of their residence status can be helped.” “Africans have always managed to survive and help their relatives back home by sending money, but it was no longer possible because even Western Union was closed.” The subsequent inability to send remittances to families in their countries of origin reportedly caused anxiety for some:In addition, the closure of social gathering places, including churches, had a significant negative impact on people’s social and spiritual lives:“Two months ago, according to the Orthodox Church, for example, it was Easter, but they could not celebrate it and that was difficult.” “For me, Ramadan was very hard, because half of it, I was alone at home with my family. Ramadan shouldn’t be like that. Ramadan means coming together, eating together, celebrating together […] and I didn’t feel any togetherness.” “We have so many WhatsApp groups. So, by any change of [official] information we send it to the different groups. For information in Dutch, I must convert it into English or in another native language, I send to the group in their language. If the pastor finds information like extension of the lockdown or a letter from the government on corona, he forwards it.” Participants reported various bottom-up initiatives in response to the COVID-19 crisis, particularly in well-organised communities. For example, support from organisations and church leaders came mainly in the form of translation and dissemination of prevention messages and official government communications into other languages used in different communities , administrative support , engaging with false information about the pandemic, psychosocial support , and food distribution:“At the beginning it was also difficult for them to ask for their unemployment benefit. Some of them were late to do that [...] and we organised a group, and helped them online, to fill-in a form and to send it online to the trade union.” Some participants indicated that the crisis had led to community and religious leaders taking on work that is normally done by social workers, as one respondent testified:“I take initiatives and call them. I know that people are living in such [lonely] situations, so I call them to make sure that they are also still safe, and that they are following the rules too […].” Other forms of support were psychosocial, such as reaching out to the lonely and elderly to provide moral support, a feeling of community, and encouraging all members to keep in touch with each other, as the following example shows:Looking at the results with an intersectional lens, we notice the combination of multiple migration-related, social, and economic disadvantages, which were perceived as significant in shaping people’s experience of the pandemic and its control measures. In turn, these experiences influenced people’s perceptions and attitudes and partially impaired them from following some public health COVID-19 prevention guidelines.Social issues relevant for many in our study population were: being migrants, living in small houses, being undocumented, perceived racism, and discrimination. The lack of trust in mainstream media channels and public health institutions, which might have been exacerbated by the above factors, and a common language barrier, led many to rely mainly on social media, which exposed them to a lot of misinformation. An example of such interlinkage is the previous experience of stigma and discrimination and distrust in healthcare institutions in media is that a news item about a proposed clinical trial of COVID-19 vaccine in Africa was perceived as racist, and capitalised by social media. Results illustrate the extent to which misinformation on social media also contributed to the reported negative attitudes towards COVID-19 public health prevention measures. Economic disadvantages included working in temporary and precarious jobs and not being able to apply for unemployment benefit, which significantly affected people’s already fragile livelihoods. The above socio-economic and migration-related factors plus the interdiction of social gatherings and closure of places of worship where people got psychosocial and spiritual support combined to negatively impact people’s psychosocial well-being significantly. In Fig. For context-specific and culturally-relevant responses to COVID-19, participants recommended using multiple communication channels adapted to people’s life situations. They also recommended taking into consideration people’s capabilities including their health and digital literacy. They also advised that their community leaders should be involved in developing and implementing control and prevention strategies related to COVID-19. This recommendation is in line with the guidance on community engagement for public health events caused by communicable disease threats in the European Union/ European Economic Area (EU/EEA) recommending “viewing the community as a partner and a resource for optimising preparedness planning, response and recovery” .To effectively address the information and prevention needs of the population, respondents advised tackling misinformation and rumours about COVID-19. In addition to this proposal, it will be important in future research to understand the patterns of this phenomenon and the reasons why many of our participants believed in misinformation. To combat COVID-19-related misinformation, participants also suggested training people in the use of social media, enabling them to distinguish between correct and false information. Such trainings should be given taking into account their capabilities.Regarding COVID-19 testing at the time of data collection, participants recommended expanding and simplifying COVID-19 testing protocols, making it less bureaucratic and offered to all regardless of legal residence status. Finally, recognition and support for community-based initiatives, as well as financial support for those working in the informal sector, were suggested as essential to achieving equitable prevention outcomes so that no one is left behind.Concerning stigmatisation of COVID-19 patients, participants recommended that the variation in people’s attitudes towards COVID-19 patients and the impact on prevention behaviours needed to be monitored and explored further to ensure that no one is excluded.This article presents SSA communities’ lived experiences in the Antwerp metropolitan area with the COVID-19 pandemic and the related control strategies, and the engagement of these communities in responding to different emerging challenges during the first phase of the outbreak in 2020. The main findings relate to information sources, language barriers, and COVID-19-related misinformation and mistrust related to previous experiences of racial discrimination, and intersectional factors of vulnerability partially challenging adherence to control and prevention strategies.Study participants reported that people in their communities, who mostly used social media as a source of information, struggled with misinformation about the new virus and prevention measures. The responses illustrate that the choices of information channels were related to language and trust in institutions, including mainstream media. The flow of misinformation about COVID-19 on social media increased confusion and further affected trust in institutions.The study results showed that many people were vulnerable to misinformation, but we did not identify specific determinants of people’s susceptibility to misinformation. To that end, future research should look into factors specifically relevant to SSA communities to guide tailored prevention. Some studies conducted in the general population to understand people’s susceptibility to misinformation and conspiracy theories relating to general topics and COVID-19 revealed several factors, such being older, having strong traditional value systems, and a self-reported minority social status –28.Perceptions of the risk of infection with SARS-CoV-2 were equally diverse and changed as the epidemic evolved. Initially, people’s low-risk perception was influenced by information they received from their countries of origin where the pandemic had not yet hit hard. This information, via social media, led some to believe that they were not at risk, simply because they were of African descent. This idea faded as the pandemic evolved. A French study found similar evolutions in risk perception over time . SimilarOur study also showed the negative collateral economic and psychosocial impact of the COVID-19 lockdown during the first wave. For example, housing conditions and social norms made it difficult for people to follow social distance, quarantine, and isolation guidelines. This is in line with findings from an Organization for Economic Co-operation and Development (OECD) study highlighting that some vulnerable groups, such as people with a migration background, are at higher risk of both COVID-19 and its negative effects “due to a range of vulnerabilities such as higher incidence of poverty, overcrowded housing conditions, and high concentration in jobs where physical distancing is difficult” . Our resDespite the COVID-19-related challenges we have examined, the pandemic also provided important lessons about social resilience and coping strategies of SSA communities in Antwerp. Our study findings highlight that these communities demonstrate a considerable degree of community engagement. For example, community and religious leaders improvised ad hoc solutions to challenges, from filling-in knowledge and information gaps among their members to developing creative solutions to mitigate the multi-layered impact of the first lockdown measures. Previous outbreak studies have highlighted the importance of community engagement in outbreak response to achieving sustainable and inclusive prevention outcomes , 41. TheThis study has several limitations. First, data stem mostly from the first lockdown period, thus the findings do not cover subsequent evolutions. Second, most of the interviews were conducted with key informants who reported on behalf of their communities. Due to the lockdown restrictions, it was difficult to enter communities and gather lived experiences of people who did not have leadership function in their respective communities. This led to a narrow selection of study participants, limiting the findings’ generalizability to socially and economically more-vulnerable participants who may have told different stories. This may have biased our results. Third, most data  were collected online. Consequently, only digitally-literate people with access to the internet participated. We thus missed out on digitally-illiterate people with relevant information on structural vulnerabilities. Some participants experienced problems due to poor internet connection or were stressed because it was their first online interview. In addition, we missed body language and spontaneity of participants, limiting the depth of the conversation. Finally, some participants doubted the confidentiality of an online conversation, which may have caused them to be reserved regarding sensitive issues. These issues may have hampered the quality and richness of the data collected but were mitigated as much as possible through professional interviewing skills and through past work experience of researchers with participants.Study participants perceived SSA communities in Antwerp as significantly negatively-affected by the COVID-19 pandemic, especially by the related control measures. Pre-existing and intersecting social, economic, and migration-related disadvantages were found to be important factors negatively affecting communities’ perceptions of the pandemic, their attitudes towards and adherence to prevention strategies. For outbreak control strategies to be acceptable, feasible and thus effective, public health professionals and policy makers need to understand these intersections and their effects especially on groups in society living in precarious circumstances. This means outbreak responses have to address the structural drivers of health inequalities to effectively reach racialised and ethnic minorities. With the prolonged continuation of the COVID-19 epidemic and widening disparities, it is urgent to involve racialised and ethnic minority communities in response strategies that not only address their needs but also build on their strengths and agency.


Meeting the health needs of migrant and refugee communities is crucial to successful settlement and integration. These communities are often under-served by mental health services. Previous research has demonstrated the effectiveness of a group mindfulness-based intervention tailored for Arabic and Bangla speakers living in Sydney, Australia. This study aimed to explore community partner perspectives on the program’s impact, contributing factors and sustainability, and to elicit suggestions for future development. Data were collected via semi-structured telephone interviews with a purposively selected sample of 16 informants. Thematic analysis was conducted using the Rigorous and Accelerated Data Reduction (RADaR) technique. Community partners welcomed the emphasis on promoting wellbeing and reported that the community-based in-language intervention, in both face-to-face and online formats, overcame many of the barriers to timely mental health care for culturally and linguistically diverse (CALD) communities, with a beneficial impact on group participants, program providers, partner organisations and the broader community. Positive outcomes led to stronger community engagement and demand for more programs. For group mental health programs, both trust and safety are necessary. Relationships must be nurtured, diversity within CALD communities recognised, and projects adequately resourced to ensure partner organisations are not overburdened. Modern Australia is a multicultural nation ; since WCommunity engagement has been variously defined, e.g., ,11. AccoOttawa Charter for Health Promotion: developing personal skills, strengthening community action, creating supportive environments and reorienting health systems  delivers this program and how she empowers people to be leaders” (I.12). All informants acknowledged the clinical lead’s knowledge, experience, and clinical and cultural competency as a significant contributory factor to the program’s success. As the main facilitator , her ability to engage participants and to integrate mindfulness concepts with their cultural and religious beliefs and relate them to their everyday practices “felt comfortable to share their personal issues and problems in front of everyone” (I.4). The presence of a familiar person as co-facilitator assisted in creating a supportive environment. Between the weekly sessions, a phone call from the co-facilitator helped to maintain motivation and encouraged mindfulness practice. When paired with the non-Bangla clinical lead, the Bangla co-facilitators provided both language and cultural support. Informants who were also case workers supported the referrals to mental health and other services.The facilitators, all experienced clinicians, created a nonjudgmental and inclusive space in which participants “We had a very good relationship and good communication with the organisers of the program, and we were able to get the program to suit the local community here” (I.11). Another stated, “People trusted that [our] organisation was not going to run any program that would not benefit them. That trust is what made it very successful” (I.16). Alignment between the community partner organisation’s vision for the wellbeing of the CALD communities and the program goals strengthened intersectoral collaboration and helped facilitate the program’s favourable outcomes. Organisations provided local knowledge and practical support and promoted the program to their own clients and the broader community. One informant explained, “really useful and very valuable … really needed” (I.3) and “very culturally competent and culturally inclusive” (I.12), commenting that it was “received very well” (I.2) by the initial target communities (Arabic and Bangla speakers) as it filled a gap in services, especially during the lockdowns. Nevertheless, “there are so many people looking for additional support” (I.5) and “there are a lot more core community needs that need to be addressed” (I.1). One informant observed, “For us to create a healthy community it is crucial that we increase the number of healthy minds… Both men and women benefitted themselves, both mentally and physically, and this has improved overall wellbeing of the community” (I.13). Another considered it an “eye opener” in highlighting the importance of wellbeing and health for the community as well as individually (I.11).As a community wellbeing initiative, the Program was regarded as very effective: a free, locally available, in-language program catering for a range of ages, cultural and religious backgrounds and migration experiences, presented by a trusted team in a safe environment. Informants described it as “Refugees need these sessions when they are newly arrived and they can know where to go and who can help them, and address mental health issues which they face, from the very beginning” (I.4). Sections of the target communities that were identified as missing out included men (most groups were for women), adolescents, and older people and others with mobility issues or lacking internet skills. Competing work, study or family commitments were an obstacle to participation. In raising mental health awareness, reducing stigma and facilitating access to relevant health and community services, the Program was considered especially beneficial for new and emerging communities and refugees with trauma backgrounds: “even through WhatsApp” (I.16). Others noted the need for additional groups for those who missed out and for refugees, with ongoing refinement informed by participants’ feedback and suggestions. Five weeks was considered a suitable length for the face-to-face program, being “long enough to ensure that people remain interested and engaged” and allow “people to reflect” (I.12). A day retreat was suggested for those who cannot commit to five weeks. Other suggestions for improvement included increasing session time to allow for more discussion, providing a summary at the end of each session, and offering booster sessions to reinforce skills learnt and encourage practice. In terms of content, one informant mentioned self-care, self-compassion and kindness, saying that “people really related to this information and would like to hear more about it” (I.6). Another proposed more psychoeducation, e.g., “a very brief slide on anxiety and clinical depression” (I.9). There was strong support for extending the program to neighbouring regions, even making it state-wide, and for developing similar in-language programs for other CALD communities.Informants suggested connecting with influential community and religious leaders; partnering with other health, disability and youth services, and settlement services; and offering the program on different days and times (including weekends and evenings) and in different formats . Some mentioned promotion, e.g., in-language advertising fliers and social media, “It is very important to sustain the program because of the community need” (I.14). To build on achievements to date, they suggested booster or follow up sessions (as was done during the pandemic) and conducting regular programs in the community to keep it in the forefront of the community’s mind, “at least twice a year” (I.2). In addition to continued collaboration and partnership with community leaders and organisations that work with CALD communities, many talked about further workforce capacity building and delivery in more languages: “having more people to facilitate … this should be run more regularly than just once a year to meet the community wellbeing needs” (I.1). Informants also brought up financial support for community partner organisations to cover staff time and program expenses such as venue hire, childcare activity materials and “community specific food for morning tea” (I.2). One stated, “I think the government should look at this program as a priority, especially when we have so much interest” (I.15).All informants wanted to see the Program continued, with one asserting NSW Plan for Healthy Culturally and Linguistically Diverse Communities 2019–2023 calls for an equitable health system where cultural and linguistic needs are recognised in policy development, service planning and delivery [In multicultural nations such as Australia, meeting the physical and mental health needs of people with migrant and refugee backgrounds is critical to successful settlement and integration . The NSWdelivery . Across delivery . Intervedelivery . Stigmatdelivery ,38, partdelivery ,39. SincSESLHD Multicultural Health Team has a long history of CALD community engagement, supported by a multicultural grants program that ran from 2000 to 2020. The “Healthy Communities” grants category was open to community organisations wanting to work in partnership with SESLHD to deliver programs and services to enhance the health of CALD communities. For each mindfulness group, activities and processes were informed by in-depth understanding of the local community, their priorities, and their cultural and religious values. In addition to language, recruitment took into account social circumstances and acculturation. Most groups were women-only, given gender sensitivities. Among the Arabic-speaking participants, psychological distress was often related to refugee experience (past or recent), war trauma, domestic violence and relationships issues, parenting teenagers or caregiver burden. For the Bangla speakers, psychosocial triggers were often associated with settlement, e.g., family separation, social isolation, adjustment issues, learning English and employment. Despite these differences, community partner informants perceived the impact on group participants and the broader community as similar. For the Multicultural Health Team, the lack of established Bangla community infrastructure presented a major challenge, hence the high number of individual partners. Similarly, referring Bangla-speaking participants for further mental health support was challenging as there are only a few Bangla-speaking psychologists and one psychiatrist, most based in Western Sydney. In building on community strengths (an assets-based community development model ) and exiFrom its inception, the CALD Mindfulness Program has benefited from strong organisational and clinical leadership. All informants spoke highly of the clinical lead who fulfilled multiple roles , and she was consistently identified as one of main contributors to program success. At the same time relying on a “clinical champion” carries risks for sustainability. Informants emphasised the need to train more facilitators and co-facilitators, and to develop similar in-language resources for other migrant and refugee communities. This will be more challenging for new and emerging communities with limited community infrastructure and mental health expertise. Bilingual and other health professionals have an important role to play in meeting community needs . High leIn extending the program evaluation to encompass community partner perspectives we have learned—and relearned—much. What worked well was collaborative partnerships with organisations and individuals that were characterised by respect, trust and a shared sense of purpose. Community partners had a strong commitment to promoting community wellbeing and were keen to support the mental health initiative. Both the Multicultural Health Team and the community partners took the process of community engagement seriously, acknowledging the complexity and dynamic nature of communities and demonstrating flexibility in their response to ongoing and emerging mental health needs. Focussing on wellness and wellbeing, rather than a clinical condition or diagnosis, avoided the stigma associated with mental disorders. Adaptation to an online stress reduction program during the COVID-19 pandemic was welcomed. Positive outcomes led to stronger engagement and demand for more programs. Opportunities for improvement include a greater focus on equity and inclusion. It is also important that the social determinants of health, such as unemployment and secure housing, are addressed, as this ensures improvements in physical and mental health and reduction in health inequity are more likely to occur ,54. RefuFunding from CESPHN made it possible to broaden the reach of the Program beyond the Arab speakers for whom it was originally designed to include Bangla speakers, and to expand the range of partners. Ongoing funding has enabled the development and delivery of programs in other community languages, and a growing suite of audio and video resources to support mindfulness skills development for people who are unable to attend the programs. Adequate resourcing is vital for sustainability and to ensure community partners are not overburdened. The Program, including development of in-language resources and delivery of the group programs, is both people- and time-intensive. In scaling up it will be important not to underestimate what Kavanagh and colleagues have labelled “soft infrastructure”, and which includes trust and hope, together with local knowledge and community venues that have both instrumental and symbolic value .The challenges raised for policy makers are threefold. First, to reconcile the system’s reliance on geographic catchment areas for program funding and service delivery with communities’ sense of identity and social networks, and expectations that services will broadly be available to community members, particularly those living in adjacent postcodes. Second, to address the shortcomings of year-to-year, short-term funding cycles which undermine workforce stability, relational efficiency and trust in public services. Comprehensive, long-term planning based on communities’ health and social needs is required. Third, to systematically invest in soft infrastructure to support the delivery of health programs to communities experiencing disadvantage. It is common for community organisations to receive funding from a range of federal, state and local government departments for narrowly defined programs, with little room for discretionary expenditure. Through goodwill and small amounts of top-up funding, they extend their work to engage with initiatives such as the one described in this article. Their deep commitment to improving the health and wellbeing of the community they serve must be more fully recognised and remunerated.We recognise that the CALD Mindfulness Program is only one of a growing number of psychological interventions that have been shown to improve mental health and wellbeing in migrant, refugee and asylum-seeker populations ,59,60. OThis study has strengths and limitations. The close involvement of research team members in the group program delivery facilitated community partner recruitment and insider knowledge supported interpretation of the study findings; we consider this a strength. Purposive sampling, with participation from all but one of the selected potential informants, combined with a rigorous team-based approach to data analysis using the RADaR technique and a careful audit trail, increased the trustworthiness of the findings. Data collection was undertaken by a project officer recruited for this purpose. While being interviewed by someone familiar with the program undoubtedly assisted with establishing rapport, social desirability is an issue. Among other limitations, we asked informants to consider the Program as a whole and did not attempt to distinguish between the three components , nor the different group delivery formats. Most informants were members of the Arabic community, reflecting the progressive rollout . Finally, all the mindfulness and stress management groups were conducted in metropolitan Sydney.The CALD Mindfulness Program has considerable potential for supporting mental health and wellbeing in a multicultural nation like Australia. This community-based in-language MBI, in its various forms and formats, overcame many of the barriers to accessing timely mental health care for Arabic and Bangla communities in the CESPHN region. The initiative had a beneficial impact on group participants, program providers, partner organisations and the broader community. Community engagement utilising a strengths-based approach was central to success. Location at community venues facilitated delivery of a culturally tailored evidence-based intervention and provided a soft entry point to the health system and other services. For group mental health programs both trust and safety are necessary. Relationships must be nurtured, and projects adequately resourced so that partner organisations and program providers are not overburdened and sections of the community are not overlooked.


There is an urgent need for high-quality biodiversity data in the context of rapid environmental change. Nowhere is this need more urgent than in the deep ocean, with the possibility of seabed mining moving from exploration to exploitation, but where vast knowledge gaps persist. Regions of the seabed beyond national jurisdiction, managed by the International Seabed Authority (ISA), are undergoing intensive mining exploration, including the Clarion–Clipperton Zone (CCZ) in the Central Pacific. In 2019, the ISA launched its database ‘DeepData’, publishing environmental  data. Here, we explore how DeepData could support biological research and environmental policy development in the CCZ (and wider ocean regions) and whether data are findable, accessible, interoperable and reusable (FAIR). Given the direct connection of DeepData with the regulator of a rapidly developing potential industry, this review is particularly timely. We found evidence of extensive duplication of datasets; an absence of unique record identifiers and significant taxonomic data–quality issues, compromising FAIRness of the data. The publication of DeepData records on the OBIS ISA node in 2021 has led to large-scale improvements in data quality and accessibility. However, limitations in the usage of identifiers and issues with taxonomic information were also evident in datasets published on the node, stemming from mismapping of data from the ISA environmental data template to the data standard Darwin Core prior to data harvesting by OBIS. While notable data-quality issues remain, these changes signal a rapid evolution for the database and significant movement towards integrating with global systems, through the usage of data standards and publication on the global data aggregator OBIS. This is exactly what has been needed for biological datasets held by the ISA. We provide recommendations for the future development of the database to support this evolution towards FAIR.Database URLhttps://data.isa.org.jm/isa/map Such dahttps://www.marinespecies.org) is focused on taxonomy, as a checklist and classification infrastructure for marine taxa (https://obis.org/) specializing in marine occurrence and environmental data utilizes the WoRMS taxonomic backbone . The database holds both geological data, categorized as confidential, and publicly available environmental data, an umbrella term for environmental and biological data in ISA parlance. DeepData is unusual in the respect that there is a direct connection of the database with the regulator and that the main data providers to the database are contractors undertaking exploration of mineral resources in the Area, albeit working directly with the scientific community. The microcosm of the CCZ data landscape, however, illustrates general processes of how biological data types are collated and subsequently published from a range of sources  of the ISA in 2002 (ISBA/8/C/6). Several LTC recommendations were made during the period of 2002–2019 , and DeepData was developed as a further iteration of the previous Central Data Repository, which was primarily focused on mineral resources. In 2019, the ISA launched the public database DeepData as a repository of deep-seabed-related data collected by contractors and related parties (e.g. research organizations conducting surveys) in the Area ( sources . Further sources ).https://obis.org/node/9d2d95be-32eb-4d81-8911-32cb8bc641c8). More crucially however, is the rapid recent development of deep-seabed mining regulations and the urgent need to address deep-sea biodiversity data gaps both for the CCZ and other regions , and include recommendations for the development of this database into the future. This work is particularly timely, given DeepData has now been operational for four years; associated records are being actively pushed onto global data aggregators such as OBIS, GBIF and International Nucleotide Sequence Collaboration (INSDC) and OBIS is also now publishing DeepData records via the OBIS ISA node . Options to select biological data by category, on the ‘MAP OPTIONS’ window, ‘Layers’ tab are as follows: ‘Contractors – Mineral Type’ ; ‘Contract Status’ ; ‘Sponsoring State’; ‘Mineral Type’ (CRFC/PMN/PMS) and ‘Location’ [including Central Indian Ocean/Central Indian Ridge and Southeast Indian Ridge/CCFZ/Indian Ocean/Indian Ocean Ridge/Mid-Atlantic Ridge/Rio Grande Rise/South Atlantic Ocean/Southwest Indian Ridge/Variable—PMN Reserved Areas/Western Pacific Ocean]. Options to search and download data are on the adjacent ‘Search’ tab, and under ‘filter by data type’ is a dropdown menu to select first data type: ‘Biological’ or ‘Environmental Chemistry’, and second sampling method: ‘Point’ or ‘Trawl Line’  depicting APEIs, mining exploration contract areas, reserved mining exploration areas and research sample data. The datasets currently held in the database include biological and geochemical analyses from samples collected using box corers, epibenthic sledges, multiple corers, remotely operated vehicles (ROVs) and benthic trawls; navigational information from expeditions; current meter recordings and water column and water sampling data. The DeepData web interface has two windows: ‘HOME’ with a map view and ‘MAP OPTIONS’ with six tabs ‘Layers’, ‘Search’, ‘CTD’, ‘Photo/Video Gallery’, ‘Library’ and ‘Docs’ on the left-hand side, with the map on the right  and combined into one shapefile in Quantum GIS . Co-ordinates for a polygon covering the CCZ including the combined shapefile were established: : northwest −164.01462, 15.70629; southwest −155.04998, –5.51238; southeast −101.9181, 6.05623 and northeast −117.66088, 23.72549. DeepData records have been harvested by OBIS and published on the OBIS ISA node since June 2021 (available at https://obis.org/node/9d2d95be-32eb-4d81-8911-32cb8bc641c8). OBIS occurrence data were downloaded as a DwC file on 12 July 2021 using the ‘occurrence’ function in the robis package , with the CCZ polygon as delineated above, for all depths. Data were not downloaded direct from the node to allow consistency with data collection from other databases for the parallel study . The same search procedure was run again with the other ‘Biological Data’ option available: ‘Trawl Line’ (File S1B). For contextual spatial data, all mining exploration contract areas, both active and reserved, and APEI shapefiles were downloaded from the ISA database , ‘Taking Off Again’ . General quantitative and qualitative observations as well as structured notes were made for analysis. Preliminary investigations of the database export showed that the records (or observations) were distributed both across columns and rows, rather than one record per row . The dathttps://github.com/IamKDO/GADMTools); sp and spData . Classes and methods for spatial data in R. R News, 5 (2), 9–13. https://CRAN.R-project.org/doc/Rnews/); spatialEco . spatialEco. R package version 1.3–6, https://github.com/jeffreyevans/spatialEco); maptools (http://maptools.r-forge.r-project.org/); rgdal  and rgeos (https://r-forge.r-project.org/projects/rgeos/). The records were then sub-selected by depth, with depths of 3000 m and greater included. Some records without depth values were present, those falling within or near the CCZ shapefile were reviewed and included if valid, for example if a benthic species associated with a publication and a benthic collection method e.g. a box core sample; and/or a relevant reference in ‘datasetName’ or ‘associatedReferences’ column. The DeepData records published on OBIS were sub-selected from general OBIS records .Contractor sub-areas were mapped in QGIS, and the data were revised to reflect actual administrative areas (i.e. contract area or APEI), rather than the origin of records (i.e. ContractorID: name of contractor submitting data) as these were not equivalent. All OBIS records were mapped together with the CCZ shapefile, using the following R packages: GADMTools  and/or ‘open nomenclature’ designations, e.g. names recorded with qualifiers, such as cf. (www.marinespecies.org). Resulting names were cross-referenced, any usage of unaccepted names was recorded and corresponding accepted names were added to the newly created ‘scientificName’ field. If no match was found on WoRMS, the original name was retained. Any qualifiers recorded with a name, e.g. ‘cf.’, were mapped to a separate identification qualifier field, and the taxonomic level of the qualifier was recorded. A sample of contractor data submissions was requested from the ISA for insight into both ISA data mapping processes and contractor data recording. A selection of records from six contractors from annual data reporting submissions from 2015 to 2017 were provided, and datasets were harmonized and processed into one file (File S3). Structured notes were made on data quality for taxonomy fields both for the published records and the unprocessed contractor data files, for general context and comparison.Initial examination of taxonomic information found extensive inconsistent recording of names, e.g. misspellings, misformatting, e.g. escaped newlines and misrecording, e.g. class names recorded in the Family field. No DwC equivalent field for ‘scientificName’ was present, i.e. the lowest taxonomic-level identification of the specimen referenced in a given record (see List of Terms). To allow data to be analysed for the parallel study . As the parallel study was examining benthic metazoans only, records of non-metazoans, such as xenophyophores, or records without taxonomic information were removed. This resulted in a final dataset for analysis encompassing 40 518 rows and 56 columns . The distinction between ‘Points’ and ‘Trawl Line’ for records in DeepData was incomplete, with trawl-collected records evident in the ‘Point’ dataset (File S1A–D). The ‘Trawl Line’ data in the database output contained a sole dataset of 45 records from a single dataset, but 8197 records in total would have fallen into a ‘Trawl Line’ classification . Altogether 99.5% of ‘Trawl Line’ data were incorrectly classified as ‘Point’ data (8152 of 8197 records). This distinction between sampling types necessitates additional data processing to recombine them. It is also inaccurate in the database, as ‘Point’ data appear to be the default category, regardless of the actual sampling method information present. More fundamentally, the distinction is unnecessary, as sampling method is recorded in a separate column.The structure of the DeepData output had observations distributed both over rows and columns or in both ‘wide’ and ‘long’ formats . Wide foMonticellina Laubier, 1961, were present in DeepData incorrectly as Monticellina Westblad, 1953 (Platyhelminthes), rather than Monticellina Laubier, 1961, accepted as Kirkegaardia Blake, 2016 (Annelida). In the contractor data submissions, the relevant record was evidently Kirkegaardia by comparison with the higher taxonomy columns, but the genus name was recorded as Monticellina, the unaccepted homonym. A taxon match for the genus Monticellina in WoRMS returns an ‘ambiguous match’  with the two options . The DeepData name matching appears to have been carried out with reference to the lowest taxonomic level only, as the record was taxon matched to Monticellina Westblad, 1953 (i.e. the Platyhelminthes genus) rather than correctly to the annelid genus Kirkegaardia Blake, 2016, an error that would have been picked up if higher taxonomic ranks were cross-referenced.As the database export file lacked a field equivalent to the DwC term scientificName, i.e. the lowest taxonomic identification of a given record, interpretation of the identification from the available taxonomic data fields and mapping of this information to a newly created field was required. Scenarios such as this which necessitate the interpretation of the data by a third party should be avoided. The output also did not include a separate field for the identification qualifier, with this information only recorded in a notes field or the actual taxonomy field/column (e.g. ‘cf. Munnopsidae’). Extensive usage of unaccepted names, multiple names per field, misspellings and notes in taxonomic data fields was evident (85% of records). This is clearly illustrated with the Phylum field, which contained 74 different entries while 31 (extant) metazoan phyla are currently recognized. The lower the taxonomic rank, the more variable the data entries present. Examination and cross-referencing of unprocessed contractor files revealed that taxonomic information for all fields was published verbatim (or close-to) from contractor data submissions (File S3), with minimal data processing evident. Where data processing of taxonomy has occurred however, it appears to have caused additional complexities, even taxonomic designations being changed in at least one case. For example, records of the annelid Several other fields also required cleaning and harmonizing where data should match a standard set of terms, i.e. a controlled vocabulary. For example, the DeepData field ‘SampleCollectionMethod’ had variable entries, including misspellings . Contractors have recorded these data in variable ways in the data templates (File S3), and like the taxonomic data, the entries had not been harmonized prior to publication. For some fields, the origin of the information present was not clear as it does not appear in the contractor templates (File S3). For example, in the field ‘HabitatType’, approximately half the DeepData records had habitat recorded as ‘water column’, but none of the corresponding contractor files had ‘water column’ recorded in the habitat field, or elsewhere (see File S3).In addition, 90% of data overall were missing or incomplete for multiple fields. Missing data included key information, such as sampling method, which is critical information for analysis. Sampling method was only present in 44% of the records (18 003/40 518). Size class is key information for deep-sea surveys with faunal groupings generally distinguished by size . Data on size class were often missing, despite being a required field in the data template . Omission of information has also produced inaccuracies. For example, in the field ‘Identification Method’ for recording how taxa were identified, text entries were present as ‘Morphological’ or ‘DNA’ but not as a combined entry, i.e. ‘Morphological and DNA’. This data recording is an artefact of an earlier iteration of the data template, where only one method could be recorded in the field, and as a result, the omission produces an inaccurate picture of how identifications were made.As a wider point, data from the majority of cruises are yet to be published on the database, as according to the ISA Secretariat, over 100 cruises have been carried out in the CCZ, but records from only 24 cruises, and 10 contractors in total published at the time of data download (https://iobis.github.io/notebook-duplicates/). We estimate overall duplication is approximately a quarter of the total records assessed (∼10 000 of 40 518). The exact number of duplicates could not be ascertained because of underlying issues with identifiers (detailed in the following paragraphs). This duplication appears to have arisen through a combination of issues in versioning of annual contractor data submissions and usage of identifiers. Looking first at versioning, multiple years of the annual data submissions have been published, but this has resulted in duplicates. The ISA has been publishing the annual contractor data submissions year by year, from 2015—the year the environmental data template was introduced—and plans to continue until to date . For the yearly data reports, these are either one-off data submissions, e.g. a standalone dataset for a particular cruise that is not then resubmitted the following year, or are iterative data submissions, where records are added to the previous year’s dataset and any updates added to the existing ones. The latter applies to the UKSRL and BGR annual data submissions for example. However, they have been handled as separate datasets rather than yearly updates, resulting in duplication.We found ∼6000 duplicate records for the contractor BGR  and ∼4000 for UKSRL (UK Seabed Resources Ltd) in the database export. Duplicates were suspected in other contractor datasets, including KOREA (Government of the Republic of Korea) and IOM , and were confirmed via an OBIS pipeline for identifying duplication in datasets  and uses the specimen identifier field ‘SampleID’ to reconcile records . In theory, any records submitted year on year with the same SampleID should therefore be matched and associated data updated if changed. For 20% of the records (8181), SampleID values were not unique. For raw contractor data, 86% of the records for the subset of 2015–2017 data submissions had SampleIDs that were either absent or not unique (File S3). Records missing a sample ID are allocated one during data processing . This explains why all records in the database export had a sample ID value even when they were absent from the raw contractor data. Here, however, the possibility arises again for duplication. For example, in the BGR data, where no sample IDs were present, records from the 2015 template were allocated a sample ID when that dataset was uploaded, and then the same records allocated a different sample ID when the 2016 and 2017 data were uploaded and therefore appear on DeepData output as separate records, producing duplication.Several fields that are not required were included in the database export. For example, backend database names were evident: ‘AreaKey’, ‘ClusterID’ and ‘BlockID’, and for the latter two, no data entries were present in any case. While the search was for polymetallic nodule data only, the output included fields for vents and sulphide deposits, including ‘HydrothermalActivity’ and ‘HydrothermalVentAge’ and ‘ExtensionPMSSite’. Additional fields were present for taxonomic information, e.g. ‘Subfamily’, the only sub- or super-taxonomic classification field included. Both the reason for its inclusion and the rules around its usage are unclear, as it has been used not for subfamily names but rather as a field to capture temporary species names, even though there are two separate fields for recording this in the output: ‘Putative.species.name.or.number’ and ‘Morphotype’. Here, the former field has been replaced by the latter (‘Morphotype’) in the 2022 template (File S4). This may be why both fields were present in the database export, and the ‘Morphotype’ field was blank.The structure of the 2022 environmental data template is split into separate tables by tab, e.g. ‘Point Sample’, ‘Towed Gear Sample’, ‘Chem_Results’ and ‘Biological_Results’. The previous template (2018) was structured with all the tabs (i.e. subtables) as one wide table. The restructuring into several tables has improved usability but has also introduced new issues, for example the separation of ‘Point Sample’ and ‘Towed Gear Sample’ tables. The separation of point and trawl data has been made to link biological and resource data in the database as it reflects the underlying structure in the database  but creates an extra processing step that should not be necessary, particularly, since sampling information is recorded in a specific field.Examining data fields in the tab ‘Biological_Results’, the 2022 template now includes fields for scientific name and taxonomic identification qualifier, essential fields for capturing taxonomic identification. These are notable improvements, saving significant processing time. Other key fields are still absent, however, such as a record identifier field that is persistent and unique  and as distinct from a specimen identifier, i.e. SampleID . Another key field missing from the template is an equivalent for the DwC field ‘basisOfRecord’ for designating record type, for example ‘machineObservation’ for an ROV-derived record or ‘preservedSpecimen’ for a specimen-based one. As in the database export, superfluous fields were present. ‘OrgNum’ for example is a required field (‘TaxaID’ in the previous template) but is an arbitrary number to provide a composite key for ISA data processing. It is therefore a backend column name and as such a redundant field that does not capture any existing data in contractor datasets. It also necessitates an additional processing step by contractors and has the potential to cause confusion. Subfamily is included, but as indicated for the database export file, this field is not necessary.In addition, some field naming and accompanying definitions are potentially ambiguous. The field ‘Matrix Type’ (Point Sample or Towed Gear Sample tabs) for example is to capture material or sample type , but usage of the term ‘Matrix’ rather than more intuitive wording such as ‘sample’ or ‘material’ is potentially confusing. A more critical example is ‘SampleID’, which has been interpreted in a variety of ways by contractors. In some datasets, SampleID was used for a batch of samples, equivalent to a deployment or sampling event ID, rather than for an individual specimen record as intended . The current data template includes the field ‘StationID’ for recording station number, but this does not account for multiple samplings at a given station, and the template does not include a deployment or sampling event ID to capture this (see Recommendations). Some contractors do not use the SampleID field at all, but rather other fields, such as ‘voucherCode’. Similarly, the field ‘Morphotype’, which is intended to capture temporary species names, could be misinterpreted, as this term usually refers to megafauna identified solely by imagery, as opposed to other types of temporary names such as molecular operational taxonomic units (MOTUs), which the field is also supposed to capture. The relevant DwC field here is ‘taxonConceptID’, which captures all types of open nomenclature or informal species names (https://github.com/iobis/notebook-deepdata). This data processing was carried out on the datasets mapped to DwC, in JSON (JavaScript Object Notation) format, on the ISA server, not a DwC archive (DwC-A) of the DeepData database output itself (The publishing of DeepData records on the OBIS ISA node necessitated a process of mapping contractor data to DwC terms by the ISA data team (see File S5). The resulting data were processed by the OBIS Secretariat for publication on the OBIS ISA node, documented in a GitHub notebook  were assigned to the diatom phylum Ocrophyta in the data mapping, presumably because scientificName was designated in DeepData as the genus name only, i.e. ‘Capsula’ rather than ‘Capsula galataea’; returning Capsula J. Brun, 1896†, an unassigned name in WoRMS. As a wider point, the DwC term taxonRank, which records the taxonomic level of scientific name, has been incorrectly populated, with the result that the number of records as ‘species’ (18 329) is almost double that of the actual total  for recording of the open nomenclature name (or taxonomic concept) in DwC terms . AdditioSignificant issues were also present in treatment of identifiers in the DwC mapping. The DwC term ‘occurrenceID’ is a key field for a persistent, unique record identifier and required for any data submission to OBIS or GBIF. Here, occurrenceID has been generated as a composite key, from combining ‘StationID’/‘TrawlID’ and ‘SampleID’. There were duplicates present in this composite key, however, 30% overall. These duplicates were also independently identified by the OBIS Secretariat and at the start of the OBIS processing pipeline records were allocated a separate unique identifier. Because of these duplicates in occurrenceID in the DeepData records, a proportion of records cannot be definitively matched between the two databases. Also, the occurrenceID as a non-unique composite key is not present in the DeepData export, only in the JSON files mapped to DwC (and therefore only in the OBIS ISA node records). The composite key would therefore need to be generated with the same formatting to allow any cross-referencing between the records from DeepData or OBIS, i.e. there is not a common record identifier. Even adding the composite key would not be sufficient for comparing the records of course as they do not match because the identifier is not unique. Further, as data processing for the records on DeepData differs from the records on the OBIS ISA node, the records appear different. Overall the number of records for benthic metazoans differed, 40 518 in DeepData and 48 536 in OBIS, which appears to be due in part to more datasets published on the OBIS ISA node than DeepData at the time of download, but this could not be clearly ascertained because of the underlying identifier issue and lack of dataset name in the DeepData records. In conclusion, standardization of data to DwC terms to prepare the DeepData records so that they can be harvested by OBIS has been a significant step forward, but incorrect data mapping in the process has also compromised data quality.The ISA has met a significant challenge to reconcile and publish often variable datasets from contractor annual environmental data submissions. It is a notable achievement that significant biological data holdings are now published and available on the database (>50 000 records and 40 518 for metazoans only at time of download). The 2022 template is also an improvement on the previous version. Through publishing of DeepData records on OBIS, and in the process, mapping data to DwC, some key issues have been addressed and the biological data can now, in part, be classified as FAIR ; File S7In a separate study, we have made the first attempt to survey all metazoan biodiversity data from the CCZ using DeepData and published species records . To accompany this, we recommend that rules are also incorporated into the template to ensure required fields (e.g. occurrenceID) are populated. Contractors or other data providers/stakeholders should also be able to submit data as a Darwin Core Archive (DwC-A). The ISA could consider that at a later stage the environmental data template is entirely phased out for a requirement of data submission as a DwC-A, i.e. as is the case for OBIS and GBIF. We acknowledge that the environmental data template is much broader than the biological data covered here, but data standards including within DwC are available to cover the relevant fields, for example the OBIS-ENV-DATA environmental DwC extension  in DwC format. DwC is a global, community-led, well-established data standard, and DwC terms are clearly understood, with a readily available, easy-to-read reference guide  could be included, which would allow for data capture of taxonomic versioning.The possibility for misinterpretation of the data is reduced if data mapping to DwC is performed by contractors rather than the ISA. With training, contractors will be well equipped to map to DwC terms including those currently misinterpreted by the Secretariat in mapping, e.g. taxonConceptID and basisOfRecord (see Recommendations).This would significantly reduce the risk of duplication, as the unique identifier occurrenceID is allocated by the contractor, avoiding issues downstream. ISA allocating identifiers as is currently happening is a major breakpoint in the system. Inclusion of the DwC term ‘datasetName’ in the template and robust versioning of annual submissions would further reduce duplication.The database export could be downloaded as a DwC-A (or as a csv file with an xml metadata file). This would standardize the database export file structure and allow for proper metadata recording, improving all aspects of FAIR. Currently, there are two options for export of biological data: ‘export query’ or ‘export pivot query’. These two options, provided to account for different data types, have a different structure . Full utilization of DwC would allow for interoperability of the data as the data export could be provided as DwC-A (as is standard practice for OBIS and GBIF).The data export from DeepData and the OBIS ISA node would be identical. At present, these datasets should contain identical information but differ owing to the different data processing steps, and more critically, because a unique record identifier is absent from the DeepData export, the records cannot be definitively matched. Once the DwC mapping is revised, datasets could be republished on both databases as matching record sets.The DeepData export file as DwC would be FAIR and ready for analysis. The current data export from the database requires significant data processing, for example cleaning of taxonomic information. Similarly significant processing was required for data downloaded via the OBIS ISA node (see Results). With correct implementation and interpretation of DwC terms according to established guidelines, in combination with adjustments to ISA workflows as detailed in the following section, the output from both DeepData and the OBIS ISA node would be ready for analysis.Making the template fully DwC compliant would allow the ISA to implement the data processing steps currently done by the OBIS secretariat. It could also facilitate the potential automation of the whole submission process and initial QA/QC steps at a later phase of the database, which could benefit both the ISA and data providers.We also recommend some key adjustments to data management in the following section to complement the aforementioned process, to address the issues identified and to facilitate republishing of these data. First, fully utilizing DwC would also necessitate a revision in the usage of identifiers . Having Separate specimen identifiers  are not required in OBIS or GBIF but can support traceability of physical specimens within an institute. The same identifier (i.e. occurrenceID) may be used by some institutes as catalogNumber. However, many collection institutes have a different code (sometimes human readable), and these are used as an internal institutional identifier including physical specimen labels mapping to DwC for the environmental data template itself and existing data holdings. For the latter, this revision of data mapping to DwC could be done both for both data submitted via the template, and legacy—or pre-template data. The existing DwC data mapping is incomplete, and incorrect in a few cases (e.g. morphospecies names mapped to taxonRemarks rather than taxonConceptID). It is important to note that because of the current mishandling of taxonomic data, unsupported scientific conclusions could be drawn without full cleaning and interrogation of the data. More comprehensive mapping will also result in better data capture. For example, some contractors have included non-specimen records, such as imagery-based records in the datasets, which could be described using the basisOfRecord field. While a key to mapping template column headings to DwC is provided, this is somewhat buried in the guidance (File S4B). This documentation could be updated once the mapping is revised. Updates for both the general user guide (published version 2018) and the DwC mapping documentation would be beneficial. The user manual for DeepData that is currently available on the website could also be reconfigured to be made more general as the current version is almost entirely focused on data providers.Monticellina example detailed in Data mapping to DwC would also allow for publishing of legacy datasets. This is particularly important given the lack of legacy data available, with very few CCZ studies for example published prior to 2000, as ascertained in the parallel study  have to be (correctly) populated to submit the data. Key information for biological/ecological studies was often absent from datasets, for example relative density and abundance data, depth, sampling method, taxa identification method, habitat (e.g. nodule/sediment/water column) and broad habitat classification . These are important data both for deep-sea research and for developing environmental policy both for the region and at broader spatial scales. Establishing a line of communication with the contractors could help address some of these data gaps and wider data-quality issues. Together with the DwC submission process and additional QA/QC, this could result in greater quality of submitted data to be ingested into the database, with fewer processing steps required, to the benefit of all stakeholders. A general emphasis should be on the quality rather than quantity of data. While issues remain outstanding, the ISA could consider documenting database limitations and data gaps clearly on their website to inform end users (including policymakers) before they conduct any analyses.As DeepData reaches a more mature state, further developments of DeepData would be worthwhile. Our review has focused in the main part on the data quality of the biological database output; here, we turn to web functionality. It should be noted however, that as web functionality is inherent to general usability and user experience, it is a key element of general database functionality. Also some of the recommendations listed later, in particular provision of bathymetric data, will be critical to characterizing deep-sea environments and therefore should not necessarily be regarded as ‘optional extras’ but rather as core development. Extensive testing of the web interface is recommended. With data systems, usability and user testing is more critical than theories as to how the systems may work. The ISA here could draw on the model of ‘agile’ software development with extensive user testing and response to user feedback  to allow the database to be directly interrogated. This will be a most useful tool for utilizing the database and improve the accessibility of data.Provision of a digital object identifier (DOI) from DeepData to allow citation of datasets, as currently available for OBIS and GBIF. This would also allow for versioning and traceability as well as data citation.Move to a web-based data submission platform, where the DwC-A is submitted via the website, and automated QA/QC checks are initiated, e.g. files submitted without valid identifiers could generate an error code as is currently done on web forms.https://www.isa.org.jm/deepdata/about#block-seabed-page-title). This would be straightforward to implement. It could also include a list of submitted datasets that are yet to be published, therefore clarifying which contractors are actively collecting data  rather than with the APEI in question. This requires geographic mapping of records (e.g. in R or QGIS) to ascertain the actual record location. The usability of the web interface could be developed further, for example the ability to click on a section of the map, such as a given contract area or APEI, and a summary of available data for that given region is made visible in a side-bar. Such functionality is not duplicating what is present on the OBIS ISA node and is aligned with the GIS–based focus of DeepData.Web functionality whereby taxonomic experts can flag erroneous identifications in records on the web portal, as ‘community curation’. This is possible in both WoRMS and GBIF (via different mechanisms), e.g. in WoRMS, taxonomic editors can add or edit records. As similar functionality is planned in OBIS, when this feature is live in OBIS, potentially the ISA data team could be alerted to any tagged records via the OBIS ISA node. This could allow for simple errors to be identified, such as pelagic species recorded as benthic. As a wider point, a pipeline to identify pelagic taxa recorded as collected from benthic samples, found to be extensive in DeepData .An additional improvement for DeepData could include the storage of relevant literature, straightforward given existing functionality to store documentation –Nippon Foundation SeaBed 2030 Project  supported by the NOAA  [NOAA National Centers for Environmental Information. 2004: Multibeam Bathymetry Database (MBBDB). Available at  Project , where, While our study is focused on the CCZ and the ISA database, it illustrates some of the wider challenges, and opportunities for biodiversity databases, in particular for developing their utility for both research and environmental policy. The DeepData collaborations with OBIS and WoRMS and data mapping to DwC herald a very welcome new phase and a rapid evolution for the database and ISA data management practices. DeepData is now integrating with global databases and global common data standards, allowing for data exchange and integration, for data to be FAIR. However, non-trivial issues with data quality remain, particularly regarding identifiers, duplication and treatment of taxonomic information. Our review of the database has illustrated the integral importance of global community-led data standards and persistent identifiers for data. These challenges of DeepData reflect those in the wider biodiversity data ecosystem. However, given the direct connection of the database with the regulator, and the possibility it may be directly utilized in development of environmental policy for a potential extractive industry, it is even more urgent that these issues are addressed. There is potential for DeepData to provide an invaluable resource both for research and environmental management. It would be of great value for example to be able to directly interrogate the database for species diversity or distribution. Or on a regional scale, DeepData could ultimately become critical in helping to develop the REMP for the CCZ and other seabed regions managed by the ISA. While feedback from user communities of databases via feature requests or bug-tracking for example is a common practice, more formal and comprehensive assessments of databases like the current study are rare, and we hope in the process to have provided the ISA with useful and implementable recommendations. The database is at a nascent phase of its development; here, engagement and involvement of the science community, policymakers and contractors to further the development of DeepData is critical. There is a collective responsibility amongst all stakeholders to support open data efforts such as DeepData and community data curation. The ISA is well placed to lead and co-ordinate activities and encourage efforts in best practice and eventually may even in time provide an exemplar for high-quality deep-sea biological datasets. Such information could be utilized for biodiversity assessments and observing programmes, including contributions to indicators and variables such as EOVs and EBVs , 4. Thesbaad013_SuppClick here for additional data file.