Sessions lasted 90 min, were audiotaped, and analyzed using thematic content analysis techniques. The most prominent themes included: (a) the influence of gendered values and beliefs on health behavior; (b) quantity and quality of patient-provider communication; (c) social and structural barriers to T2D self-management; and (d) preferences for peer-led T2D self-management interventions. Results suggest that these themes may be particularly salient for T2D self-management in older African American men, and that this population may be receptive to a peer-led T2D self-management intervention.Older African American men are at increased risk of Type 2 Diabetes (T2D) but demonstrate high rates of poor illness management. They also participate in interventions targeting illness management at extremely low rates and are at high risk for dropout from clinical trials. One modifiable factor that has been identified in the literature that contributes to these disparities is health beliefs particular to men. Yet, despite the fact that illness management interventions have been developed to meet the needs of African Americans, none have followed recommendations to use gender-sensitive programming to meet the needs of men. The primary aim of this study was to advance our understanding of the intersection of age, race/ethnicity and gender on T2D self-management among older African American men, and to explore their preferences for a peer-led T2D self-management intervention. Two focus groups were conducted with older African American men ( In the United States, about 30 million or 12%) of adults over the age of 18 have diabetes. For adults over the age of 65, this percentage increases to 25%  that people are living to eat whatever food they can really afford. Now, it may or may not be the appropriate food for a diabetic … we need to know what financial conditions … they have.” Yet another participant reflected on his experiences with accessing consistent care, stating, “and every time I went to the doctor, it was so frustrating. Every time I went to that clinic I had a different doctor.” Other in-depth qualitative studies have documented that consistency in interacting with the same health provider is both perceived as a hallmark of patient-centered care and is reported to be an important motivator for medically underserved patients to adhere to preventive and other treatment recommendations for managing their conditions .Theme 3: Men’s Preferences for T2D Self-Management InterventionsIn these focus groups with African American men living with Type 2 diabetes, we learned that men expressed a desire for men with diabetes to work as health advocates among their friends and family in an effort to share information about diabetes prevention and treatment. For example, one participant stated: “I urge all my children, my friends … make sure you keep your blood levels down … we become ambassadors. Six becomes twelve, twelve becomes and so on.” In expressing their preferences for individuals delivering T2D interventions and content, Black men in this study stated that they would like to learn about how to interact better with their physicians. These men reported that they would like to work with someone who understands not only diabetes but also their social situations. As an example, one participant stated: “That would be the important part to have somebody to further my knowledge of what I should focus on when I go in to see my doctor, what to ask, what to say, concerning my particular situations. That would really be interesting.” Yet another participant expressed, “They need to have an understanding of the person’s environment, and their social situation.” Here, participants were emphasizing the importance of shared experiences, possibly including shared circumstances, with the individuals who advised them on managing their T2D. As mentioned earlier, participants discussed feeling a disconnect between the recommendations provided by health providers on how to manage their condition, and the material resources they had at their disposal to adhere to the complex medical and behavioral regimen. Theme 4: Patient-Provider CommunicationThe final theme centered on black men’s experiences with patient-provider interactions, and how impactful positive communication and rapport, or a lack thereof, were on men’s diabetes self-management efforts. For instance, one participant shared the following about his patient-provider interactions: “just be concerned, without sugar coating. You can show a person that you care about them and that helps without being phony. And you ask relevant questions. And please do not scold me. Oh my god. Don’t do that ... Get off of my back. Leave me alone. So, you want a doctor who is kind, and caring, and concerned about you.” Men in this study also highlighted the need for an interdisciplinary team to be involved in managing their care: “you need a cardiologist, an internist, and a urologist. You need those, three amigos, I call them.” In line with these discussions, previous studies accentuate the need to focus on how African American men navigate difficulties in communicating with their healthcare team . Men alsTaken together, the themes that emerged from this qualitative analysis—centered on gender norms, T2D self-management barriers and facilitators, preferences for T2D intervention, and patient-provider communication—reinforce that Black men with T2D have specific unmet health needs and preferences for engaging with the management of their condition, and the health providers who support them. Given that diabetes self-management interventions to date have rarely targeted older Black men, who are at highest risk for poor diabetes outcomes, the themes emerging from this study underscore the potential need for peer-led T2D interventions with tailored intervention content to meet the specific needs of older Black men. Themes arising from these focus groups also underscore the need to equip Black men with the tools and support to engage in effective communication with medical providers in the context of their chronic disease management; communication has not been a target in T2D peer interventions to date. The ultimate aim of our research is that it be used to inform the development of tools and interventions designed to improve T2D self-management among Black men. Future research looking to extend this line of inquiry should center on developing and adapting trainings for gender-matched peer-leaders or lay helpers. Interventions should focus on how to encourage conversations between men and peer-leaders regarding beliefs that affect men’s health behaviors and consequent outcomes, along with how to best model alternative views and perspectives that allow for successful disease management to be framed as competence and strength, instead of weakness. Our study has limitations. First, while our findings may apply to populations of older Black men with T2D, of comparable communities and backgrounds, we cannot generalize these findings to all older Black men with T2D. However, our study may well be used in future research, with more complex analysis and larger numbers of older Black men, to further describe factors that impact T2D self-management for this population. Second, since our study focused on older men, our findings may not represent the experiences of younger Black men with T2D. While limitations do exist, this preliminary study is a critical first step in expanding the knowledge base on Black men’s T2D self-management. These limitations notwithstanding, our findings raise important issues with regard to Black men as a medically underserved population. The contribution of this research is to offer a more nuanced understanding of the unmet T2D self-management needs, preferences, and barriers facing this population, who have not traditionally been at the center of diabetes intervention efforts.


No label condition perceived the defendant as deceitful, unremorseful, rude and aggressive.One-hundred-and-sixty jury-eligible participants read a vignette describing a male who was brought to the attention of police for suspicious and aggressive behaviours and displayed atypical behaviours in court. Half of participants were informed that he had autism spectrum disorder (ASD) and were given background information about ASD; the other half received no diagnostic label or information. The provision of a label and information led to higher ratings of the defendant’s honesty and likeability, reduced blameworthiness, and resulted in fewer guilty verdicts, and more lenient sentencing. Thematic analysis revealed that participants in the label condition were more empathetic and attributed his behaviours to his ASD and mitigating factors, while participants in the  Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterised by impairments in social communication and interaction, and restricted and repetitive behaviours and interests , as well as perceived blameworthiness , guilty verdict  and sentencing leniency . Participants’ responses to follow-up open ended questions formed the basis of a qualitative analysis of the reasons for their ratings and judgements.To avoid carryover effects, the study employed a between-participants survey design whereby mock jurors were randomly assigned to one of two label conditions: ‘M = 28.17 years, SD = 12.93), and comprised 42 males and 118 females. The majority of participants were employed (55.6%), and/or currently studying (61.9%), with 20.6% having studied psychology/ psychiatry to degree level or higher. Participants were randomly assigned to either the Label+info  or No label condition . Ethical approval was obtained from the University of Bath’s Psychology Research Ethics Committee and all participants provided their informed consent to take part.An opportunity sample comprising 160 participants who were eligible for jury service in the UK  participated in this study. Participants were recruited via advertisements placed on social media , local volunteer organisations, and the Research Community Participation Panel at the University of Bath. As an incentive for taking part, participants were invited to enter a prize draw to win £50 in Amazon vouchers. Participants ranged in age from 18 to 68 years .All participants completed the study on the online Qualtrics data system  their perceptions of the defendant’s cognitive functioning, honesty, and likability. Participants were also asked to what extent they believed the defendant was to blame for the incident , whether they felt he should receive a guilty or not guilty verdict  and, if they reported that he should be found guilty, how harshly he should be sentenced . These questions were adapted for the purposes of the current study aims from previous mock juror research examining credibility  with separate univariate tests was run with the three credibility variables: cognitive functioning, honesty, and likability. Next, analyses examined mock juror perceptions of culpability and sentencing. A Finally, participants’ responses to the open-ended questions were qualitatively analysed by the second author (IM) using an inductive thematic analysis, whereby themes were data-driven and emerged naturally from the data  = 6.31, p < .001, ηp2 = .11. Univariate tests showed that honesty, F = 14.96, p < .001, ηp2 = .09, and likability, F = 7.47, p = .007, ηp2 = .05, were significantly higher for participants in the Label+info condition compared to those in the No label condition. There was no significant effect of condition on ratings of cognitive functioning, F = 0.90, p = .411, ηp2 = .004. Table A one-way MANOVA revealed a significant multivariate effect of label condition on the three combined credibility dependent variables, Pillai’s Trace = 0.11, Label+info condition reported feeling that the defendant was less to blame for his actions than participants in the No label condition, t(158) = 4.89, p < .001, Cohen’s d = 0.78  = 8.13, p = .004. Participants in the No label condition were more likely than participants in the Label+info condition to assign a guilty verdict, while participants in the Label+info condition were more likely than participants in the No label condition to assign a not guilty verdict  than participants in the No label condition , t(98) = 2.20, p = .030, Cohen’s d = 0.45.Participants who assigned the defendant a guilty verdict were asked how harshly they felt he should be sentenced. Participants in the subthemes were identified within each of these main themes, which are outlined below and detailed in Table Four overarching themes emerged from the data corpus as a whole: honesty, inappropriate language, culpability, and consequences, respectively. Further excessive candour, describing it is as positive attribute, others viewed it as aggressive and inappropriate. There was also a belief by many participants in the Label+info condition that autistic people cannot lie, which led mostly to them viewing the defendant more positively. However, in the No label condition, while some participants viewed the defendant as generally honest, others felt that his behaviour  and “aggressive” language were actually indicative of dishonesty and that he was lying in order to protect himself.The defendant was generally viewed as very honest, with many participants referring to his comments in court  as evidence of this. While many participants were sympathetic to what they viewed as Label+info condition acknowledged the defendant’s language as rude but were more sympathetic due to his ASD and made allowances for this. However, participants in the No label condition felt that the defendant’s inappropriate language was compounded by other factors which resulted in negative perceptions. For example, his apparent lack of remorse, avoiding eye contact and swearing were frequently referred to by participants as “unhelpful”, “off-putting” and “rude”.The majority of participants perceived the defendant’s swearing and language towards to the lawyer as off-putting and rude. This was framed sympathetically by some  but negatively by others, resulting in two subthemes. The majority of participants in the Label+info condition predominantly focused on mitigating factors (elements of the case which reduced the defendant’s responsibility or culpability), such as a lack of intent and the defendant’s ASD. They acknowledged the defendant’s crime, but suggested it was the result of his ASD and the situation he was in. Specifically, they felt that his ASD caused him to become easily “overwhelmed” and “anxious”, and that his actions were “in no way intentional” but a reactive response to a stressful situation, and that a lack of control over this made him less blameworthy. Several participants also questioned whether the officers acted appropriately and had been trained to deal with this kind of situation, thus transferring some of the blame to the actions of the police officers.Participants in the No label condition, in contrast, focussed more on aggravating factors which increased the defendant’s culpability, such as the defendant having a “short fuse and aggressive tendencies”, or his apparent lack of concern and respect for others. While some participants in the No label condition also acknowledged situational factors, these participants nevertheless felt that the defendant should “take responsibility for coping with his own reactions”.Participants in the No label condition felt that punishment was necessary “to show society that he didn’t just get away with it”, most felt that the punishment should be small given the nature of the crime. A common concern, particularly among those in the Label+info condition, was that the punishment associated with finding the defendant guilty would be of little benefit. Indeed, many participants expressed doubt relating to knowing that the defendant was guilty yet lacking confidence in assigning a guilty verdict and feeling concerned over how this verdict and the associated punishment would affect the defendant. Many participants (particularly in the Label+info condition) suggested that some form of rehabilitation to help the defendant would be more appropriate than a prison sentence. Although to a lesser extent, some participants in the No label condition also recognised that the defendant needed help “from professionals”.A number of participants in both conditions considered the consequences of a guilty verdict when deciding responsibility. While some participants in the No Label condition were asked they thought the defendant had a developmental disability or mental health condition. More than half (57.5% n = 46) of participants in this condition indicated that they thought the defendant might have ASD.On completing the study participants in in the Label+info’) rated him as more honest and likeable, and less blameworthy for his actions. They were also more likely to suggest a not guilty verdict and were more lenient in their views on appropriate sentencing, compared to participants who received no information about his diagnosis (‘No label’). In fact, the only variable on which there was no significant difference between label conditions was for perceptions of the defendant’s level of cognitive functioning.The present study found that a defendant who was described as exhibiting autistic-like behaviours was perceived as more credible and less culpable for his actions if information about his ASD diagnosis was known. Specifically, mock juror participants who were provided information about the defendant having a diagnosis of ASD and how he was affected by it , more sympathetic views of his inappropriate language and behaviour , a greater focus on mitigating factors  and the consequences of being found guilty when assigning him a not guilty verdict. In contrast, participants in the Label+info condition nevertheless expressed uncertainty over the extent to which the defendant’s ASD should act as a mitigating factor for guilt. For example, one participant reported that “if the defendant wasn’t autistic it would be easy to decide that he was guilty”. Establishing responsibility for an autistic defendant may be harder than for other groups , provides a further striking example of the influence that a diagnosis can have on perceived culpability, raising important legal, philosophical, and ethical questions including whether ASD could and should be considered a “get out of jail free card” Sutton . The preLabel+info condition were also related to considerations regarding the defendant’s ability to cope with the CJS. This is consistent with previous research suggesting that, given potentially damaging effects of prison on an autistic individual, both lay persons and judges often view rehabilitation methods as preferable to harsher prison sentences (Berryessa Participants’ qualitative responses to the follow-up questions indicated that higher sentencing leniency and more not guilty verdicts in the No label condition who took it to imply that he was disinterested, uncaring, and did not regret his actions, which reduced his overall likeability. On the whole, participants also did not like the defendant’s swearing and rudeness, but those in the Label+info condition were more sympathetic and viewed it as a by-product of his ASD rather than an inherent personality characteristic, thus moderating the diminution of his likeability. Previous research examining first impressions of autistic individuals suggests that how an individual presents themselves socially drives impression formation, with autistic individuals often being perceived more negatively in this context (e.g., Sasson et al. The present findings that the provision of an ASD label together with background information about the disorder resulted in more positive likeability and honesty perceptions of an autistic defendant is in line with previous findings in everyday contexts as well as for child witnesses (Brosnan and Mills Label+info condition also reported a strong assumption that autistic individuals cannot or do not lie, which is only partially supported by a limited and inconsistent body of literature with children (e.g., Li et al. No label condition perceived the defendant as a character who was lying for his own interests, based on his body language, difficulty recalling the event, and lack of eye contact. This is consistent with research showing that credibility assessments are often based on verbal and non-verbal behaviours such as eye contact (Wright and Wheatcroft Participants in the Recent findings suggest that many autistic individuals are reluctant to disclose their diagnosis for fear of discrimination and a lack of understanding. For example, Crane et al.  found thNo label condition guessed that the defendant might have ASD, yet still significant differences emerged suggests that if anything the present study may have underestimated the effect that a label had on juror perceptions. A second limitation is that the study design did not incorporate juror instructions, such as how to assess evidence and how to determine credibility, which may have been why several participants articulated uncertainty and doubt over their decision. Third, while vignettes are one of the most commonly used methods in establishing attitudes towards certain vulnerable groups (Swami Limitations of the present study are acknowledged. First, while more representative than a psychology student sample, one-fifth of the current participants had studied psychology and the majority were white and female. Nevertheless, that more than half of those in the ps Swami  they do Heterogeneity within cases, offences and offenders also highlights the need for future research to replicate and extend this study with different methodologies. Future research should explore, for example, perceptions of defendants committing different types of offences, such as those involving sexual assault, stalking, or hacking. Given the high rate of co-occurring diagnoses such as ADHD that have been suggested to underlie certain types of offending behaviour in ASD (Allen et al. The present study aimed to examine whether disclosure of a defendant’s ASD impacted mock-juror judgements of credibility and culpability. Findings suggest that the information provided to jurors about an autistic defendant can have a profound effect on their judgements of his likeability, honesty, blameworthiness, guilt and sentencing. With the provision of an ASD diagnosis label and further information, the defendant’s ASD was predominantly seen as the uncontrollable cause of his behaviour, compounded by the situation he was in. This has important implications not only for the courts, but also for other areas such as employment and social situations where the disclosure of an individual’s ASD diagnosis may impact others’ perceptions of them. While the present findings suggest that revealing a diagnosis of ASD could be beneficial, existing literature suggests autistic individuals are fearful of doing this. However, the present findings indicate that autistic individuals who do not reveal their disorder may be perceived more negatively, while an ASD label motivates compassion, understanding and mitigates responsibility. These findings have significant implications for disclosure and should be an encouragement to the ASD community.


Many women and men lack knowledge about fertility, including timing of the fertile window, age-related decline, and lifestyle factors that may impair fertility. The Internet has become an important source of information, but evidence-based information on fertility and reproduction in Swedish on the Internet is limited. The present study aimed to develop and evaluate an evidence-based fertility awareness website, ‘reproduktivlivsplan.se’, to increase awareness of fertility and provide guidance for improved preconception health and care among individuals and healthcare providers.n = 24) answered a questionnaire covering attitudes and views on the Reproductive Life Plan website as a tool for counselling.The website’s content, design, and layout were evaluated qualitatively among a total of 20 nursing students. An expert group of researchers also provided feedback on the content. Finally, healthcare providers . The website, including the content and layout, was positively evaluated by most participants and was amended according to suggested improvements. Uppsala University was found to be a trustworthy source.The evidence-based website ‘reproduktivlivsplan.se’ was well received among users and healthcare providers and may provide guidance for improved preconception health and care if it becomes well known and frequently used. Preconception health and lifestyle factors, such as at what age to have children, nutritional status, weight, tobacco- and alcohol use, are important determinants of fertility, healthy pregnancy, and normal foetal development . StudiesIn addition to postponed childbearing, a considerable proportion of women and men of reproductive age are overweight or obese and use tobacco and alcohol—which are well-documented risk factors for adverse health, reproductive, and neonatal outcomes ,12–16. AFertility awareness has been defined as ‘the understanding of reproduction, fecundity, fecundability, and related individual risk factors  and non-individual risk factors ; including the awareness of societal and cultural factors affecting options to meet reproductive family planning, as well as family building needs’ .FertiSTAT.com was launched in 2009 by researchers at Cardiff University in the UK (yourfertility.au) in 2012 that successfully has reached a broad public internationally, including health professionals , a web-based education material on fertility. Moreover, in 2016, the first consumer-focused preconception health website in the US was launched by the National Preconception Health and Care Initiative (PCHHC) (showyourlovetoday.com). The aim of the latter was to improve the health of young adults through guidance and empowerment and by bridging the gap between them and their healthcare providers  is a non-normative counselling tool, recommended by the Centers for Disease Control and Prevention (CDC), for reflection on intentions and strategies for successful family planning within the context of personal life goals and values ,23. RLP The RLP concept has previously been evaluated in contraceptive counselling in Swedish settings. Using RLP increased women’s knowledge about reproduction and folic acid intake . It was reproduktivlivsplan.se, to increase awareness of fertility and provide guidance for improved preconception health and care among individuals and healthcare providers.The aim of the present study was to develop and evaluate an evidence-based fertility awareness website, The textual content of the website was based on two 28-page colour booklets, designed and previously used by our research group when evaluating the RLP tool during contraceptive counselling and STI testing in a randomized controlled trial and a mixed method study ,25. The We consulted an external web design company to construct the site. The aim was a simple, responsive design with minimal columns and a limited amount of text for easy navigation of the website. For structural consistency, the main heading ‘Reproduktiv Livsplan’ (in English: Reproductive Life Plan) was kept visible on all pages. Images and colours were chosen from a gender-inclusive perspective as well as for thematic and aesthetic harmony. For increased usability, the website was designed to be compatible with mobile devices.The website menu was divided into six main headings: ‘A plan for the future’, ‘Conception’, ‘Fertility and health’, ‘Test your knowledge’, ‘Your reproductive life plan’, and ‘Do you want to know more?’ Each heading has one or more subheadings covering the impact of age on fertility, preconception risk factors, and health-promoting information. This included a fertility awareness quiz, personal print-and-go guides for reproductive life planning and preconception counselling, as well as links for further information—all geared towards both women and men.To catch the user’s attention, the RLP question ‘Do you wish to have children?’ was displayed in large font on the centre of the screen. The user responds by choosing from three different alternatives: ‘Not now, perhaps later’, ‘Yes, within one year’, or ‘No’. Each response alternative is followed by preconception advice tailored to the chosen response . Below twww.reprounion.eu). Finally, after amendments, the website was evaluated by nurse-midwives using the website in contraceptive counselling.The website was evaluated first by nursing students that represented the primary target group and later by a multidisciplinary expert group of reproduction researchers  and objective(s). They were further asked to discuss sufficiency, clarity and saturation of information, and trustworthiness of the website source, along with suggestions for further improvements. While navigating on the website, participants provided feedback on acceptability of colours, images, and how they viewed the website in terms of user-friendliness.Nursing students between 20–30 years from two universities in Sweden were invited to participate in focus groups interviews. We chose this convenience sample of nursing students since we presumed that they were similar to the target group of young people between 20–30 years of age. The students received verbal and written information about the study by the course administrator. One moderator led the interviews. Participants were provided with a link to a draft version of the website for online navigation on individual laptops during the interviews. A semi-structured topic guide with open-ended questions was used, in which participants were asked to assess the webpage’s The expert group was asked to revise the draft version of the website during a research seminar in December 2016, attended by two of the authors (M.E.R. and T.T.). The website was displayed by the first author and simultaneously discussed by the group during online navigation.n = 37) working with contraceptive counselling at seven clinics in southern Sweden were introduced to the RLP concept and the RLP website by the authors M.E.R. and T.T. during a three-hour presentation and workshop. We then asked the nurse-midwives to use the website over a three-month period (June through August 2017) during contraceptive counselling, and thereafter anonymously complete a short 14-item questionnaire. The questionnaire covered brief and general background data regarding participants’ age, experience of working with contraceptive counselling, and number of weekly contraceptive counselling visits. It also covered participants’ views on information provided on the RLP website, and its usefulness for clients and healthcare providers. Two reminders on returning the questionnaire were sent to the participants.Nurse-midwives  were informed that participation was voluntary, that they could withdraw participation at any time without reason or negative consequences, and that no unauthorised persons would have access to the data. They were also informed that all collected data would be presented on a group level and that no individual could be identified. Students signed an informed consent. The researchers’ contact information was given to participants. According to Swedish law, there was no need for additional approval from a regional ethical committee.The focus group interviews were audio recorded, transcribed verbatim, and analysed deductively by manifest content analysis. Collected questionnaire data were analysed descriptively.Final-year Swedish-speaking nursing students  aged 20–30 years took part in three focus group interviews, with 4, 5, and 10 participants each. A fourth scheduled focus group interview was transformed into an individual interview because of unexpected participant drop-out. Interview data were collected at each study site between March and May 2016 and between March and April 2017.First impressions of the website revealed comments such as: ‘appealing’, ‘lucid’, ‘simple and good’, ‘modern’, ‘clear’, but also comments such as ‘a bit sterile’ and ‘anonymous’. The fertility quiz was highly appreciated. Participants generally found the content of the website to be sufficient and interesting, and it was new to some.The participants considered the target group to be clear, directed towards both women and men, including individuals with no plans of having children. However, several participants believed it would be difficult to get women and men who did not intend to have future pregnancies to visit the website:‘After all, I still think this website mainly targets those who want children. […] You enter this page if you want children in your life, now or later, basically.’[General agreement]not have children …’ (Focus group interview 2)‘And even if it’s great with all these links on where to turn [i.e. for contraceptive advice], I don’t think you’d visit the website if your primary goal was to Many liked the brief format of the website and appreciated the external links where interested readers could access further information. Others suggested the website could be even more comprehensive and wanted to have information on a variety of related topics, ranging from in-depth information on contraceptive methods, child rearing, to rules and regulations regarding parental benefits:‘I have to say, I like the brief format. With limited amount of text, you can follow it easily and concentrate on the actual information. It doesn’t take a whole day to read through it.’‘Well, yes, I’m not sure. I might be a bit of a nerd but if I buy something, I want to read everything there is to read about it. I don’t have any children of my own, but if I would plan on getting pregnant, I guess I’d like to read everything there is. So, perhaps more text, if you ask me.’‘I prefer it to be brief.’‘See, I’d never have the patience to read long sections of text.’‘You’d probably lose some [readers] with too much information.’‘Yeah, well then it’s smart to have options, like “would you like to read more … go to …” because, at this website, for this purpose, it’s probably just enough … since it refers to external links for those that are interested in further information.’ (Focus group interview 1)Some criticized the website’s heteronormative language and called for more focus on challenges faced by the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community, in terms of reproductive health. Accordingly, a researcher in gender studies reviewed and adjusted the text where appropriate.‘My first impression was that this website was mainly directed towards heterosexual couples. At least at first sight. But, that is mostly pictorially …’ (Focus group interview 2)‘Since their [transgender people’s] reproduction has been prohibited in a way, I believe it would be good to include them and mention this too.’ (Focus group interview 4)Most participants found the website to be trustworthy with reliable information from a valid source . However, there were a few suggestions on clearly identifying the website source and making the university logotype more visible as well as including the contact information, all of which have been amended. In addition, one respondent suggested a chat forum to increase the website’s credibility:‘For me, having a chat forum makes it seem like a more serious website. Then it’s always updated, in a sense. Someone is in charge … If I pose a question, someone will answer it, which means somebody is responsible for the content. It gives an impression of seriousness and indicates that it is trustworthy.’ (Focus group interview 4)There were some remarks about the colours and images, where some participants found the colours a bit too dark. Others voiced that the images looked semi-professional, and some believed they appeared as too heteronormative. Participants suggested using less heteronormative images with stronger coherence with the website’s theme and colours. Some images were replaced and adjusted following participants’ comments.To test usability, participants were asked to explore the website and test the ease of use while simultaneously sharing verbal feedback. Overall, they found the website to be user-friendly, and information sought for was found swiftly. Participants stated that the website was also easily accessible on mobile devices, and well-structured in its format. There were some suggestions on how to better direct the user from one page to the next by adding ‘next-buttons’ at the bottom of each page. This was later amended. Participants revealed a few dead-end links, which were subsequently corrected.The expert group suggested the content of the website to focus more on age-related fertility decline considering its importance in connection to fertility problems. Amendments were made according to the suggestions.Of 37 invited nurse-midwives, 24 filled out and returned the questionnaire, resulting in a 65% response rate. Mean age of participants was 50 years (range 29–64 years), and mean years of experience in contraceptive counselling were 14 years. The participants had on average 10 visits for contraceptive counselling per week (range 3–15). Nurse-midwives’ general views on the RLP website are presented in Reproduktivlivsplan.se to increase awareness among individuals regarding the impact of age and lifestyle in relation to fertility and reproductive health, and to encourage reproductive life planning. The website was positively evaluated by young women and men, and by healthcare providers; thus, it has the potential to provide general guidance supporting healthy lifestyles and to serve as a tool for healthcare providers to increase preconception health awareness.We developed Proper and reliable preconception health information may ultimately help prevent adverse pregnancy outcomes. Most participants in our study found the information on the website to be interesting, sufficient, and even new. On one hand, it has been argued that knowledge, awareness, and belief in the benefits of preconception care do not necessarily lead to improved preconception health practice . On the Reproduktivlivsplan.se is the first website focusing on reproductive life planning and evidence-based key messages on preconception health in Sweden.In Sweden, as in most European countries, information on preconception health available for healthy women and men is still limited. Existing recommendations, guidelines, and web information are often fragmented and inconsistent . ConsequThere are many challenges to successfully target young individuals with health information preconceptionally. Many seem to start seeking information once pregnancy is confirmed or when having difficulties conceiving. Informants in our study believed it would be difficult to motivate women and men without (immediate) desire for children to visit the website and to establish a reproductive life plan. Other identified barriers include lack of awareness, perceived sufficient knowledge or not belonging to the target group, and misunderstanding the aims of preconception care ,31. Stilduring client consultations by navigating the website together with the client. Clients can also be encouraged to visit the website prior to visits, to be better prepared for discussions of personal interest. Also, other professions, such as educators, are important key persons in disseminating preconception health messages, and the website could be a valuable tool during sexual health education in schools.Opportunities for offering information on preconception health and lifestyle include contraceptive counselling and screening for STIs and cervical cancer, in which information about fertility preservation plays an important part. In Sweden, contraceptive counselling is free of charge, and nurse-midwives, who carry out 80%–90% of all contraceptive counselling consultations, therefore have an excellent opportunity to spread information on preconception health and care. The website can be used by the healthcare provider Information material is often ethnocentrically biased with cultural and linguistic shortcomings. To address the needs of non-Swedish-speaking people, we decided at a late stage of the website-developing process to translate the website into six languages commonly spoken by immigrants and minority groups in Sweden. Further evaluation is needed for the cultural translation of the messages and for assessing the value of the multilingual approach in these groups.We evaluated the website using both qualitative and quantitative methods. Focus group interviews create a non-judgemental environment, which can encourage participants to share their views without the need for consensus. Qualitative data enable understanding of the informants’ perspective, which is important for successful implementation of new working procedures in clinical practice. All informants were nursing students, with the majority being females—a group that may have greater knowledge and/or interest about health information and reproduction compared to the general population, including men. Greater diversity among informants regarding gender, educational level, and non-Swedish-speaking people would have added strength to our study, and interviews with men are already ongoing. Compared to individual interviews, focus group interviews might not be as efficient in covering maximum depth on an issue. However, the informants were highly engaged and discussed the website openly, extensively, and from a wide range of perspectives. All interviews, including the individual interview, provided constructive criticism and valuable suggestions to improve the website. Since the informants were only interviewed once, potentially valuable feedback on the modifications of the website was not collected, and this might be considered as a limitation. On the other hand, an expert group gave feedback on the content during the development process, and the final version of the website was positively evaluated by the nurse-midwives.Despite several reminders, only 24 out of 37 nurse-midwives returned the questionnaire. Also, even though all except one of the nurse-midwives were positive towards the website, only seven had used it during client encounters, with lack of time being given as the most common reason. This could possibly have affected the results. It also demonstrates the challenge of implementing new working procedures, and future studies can evaluate the use of RLP in clinical encounters. Measuring knowledge increase and pregnancy intention before and after contraceptive counselling guided by the RLP webpage would also be of value. To evaluate the use of the website, we are measuring the website traffic regularly, and currently the website has had more than 30,000 views since it was launched in 2017. The work on spreading it to both young individuals and healthcare providers is on-going, e.g. through radio, social media, information meetings with healthcare providers, and at national and international conferences.reproduktivlivsplan.se was well received among users and healthcare providers and may provide individuals with general guidance to achieve their reproductive goals. It has the potential to serve as a tool for healthcare providers in preconception counselling and for educators when discussing sexual and reproductive health.The website


In a recent publication Tom Douglas and Katrien Devolder have proposed a new account of genetic parenthood, building on the work of Heidi Mertes. Douglas and Devolder’s account aims to solve, among other things, the question of who are the genetic parents of an individual created through somatic cell nuclear transfer (i.e. cloning): (a) the nuclear DNA provider or (b) the progenitors of the nuclear DNA provider. Such a question cannot be answered by simply appealing to the folk account of genetic parenthood, according to which the genetic parents of an individual are those individuals who produced the egg and sperm, respectively, which fused to create the embryo. It cannot be so as in cloning there is no fertilization as such. In this article I critically examine Douglas and Devolder’s new account of genetic parenthood and demonstrate that it is vulnerable to counterexamples that exploit the lack of a condition specifying that genetic parents should cause a child’s coming into existence. A., Dinnyes, A., King, T. J., Paterson, L. A. … Young, L. E. (2002). Somatic cell nuclear transfer.  I say a nearly identical genetic copy because whereas the totality of the nuclear DNA would come from the nuclear DNA provider, the zygote’s mitochondrial DNA would most certainly not come from said nuclear DNA provider, or the provider’s maternal line. This is the case as in mammals mitochondria are matrilineally transmitted.2Proceedings of the National Academy of Sciences of the United States of America. 115(51), 13039–13044; Schwartz, M., & Vissing, J. (2002). Paternal inheritance of mitochondrial DNA. New England Journal of Medicine, 347(8), 576–580.It is very uncommon for paternal mitochondria to be incorporated into the zygote. Luo, S., Valencia, C. A., Zhang, J., Lee, N. C., Slone, J., Gui, B., … Huang, T. (2018). Biparental inheritance of mitochondrial DNA in humans.  For the clone to be an identical genetic copy, sensu stricto, of the nuclear DNA provider the latter, or someone from their maternal line, should also provide the would‐be enucleated egg that in turn contains the mitochondria.Dolly the sheep is probably the most famous sheep in the world, and she is rightly so as she was the first mammal produced via cloning. In cloning the nucleus of a somatic cell is transferred into an enucleated oocyte (i.e. an oocyte whose nucleus has been previously removed), and then it is activated by external means. If everything goes according to plan the cell will begin to divide, the embryo will be transferred into a womb  and then, after some time, an ‘nearly identical genetic copy’ of the individual who provided the somatic cell (i.e. the nuclear DNA provider) will be born.could be cloned, and if so whether it would be morally permissible to do so.3The Stanford encyclopedia of philosophy. Stanford, CA: Stanford University. https://plato.stanford.edu/entries/cloning/Devolder, K. (2017). Cloning. In Zalta, E. N. (Ed.).  Broadly speaking, two positions emerged. On the one had there are those who argue that it would be immoral to clone human beings, and on the other hand there are those who argue that under certain circumstances it would be morally permissible to do so. An example of the former is Leon Kass: ‘Mass‐scale cloning of the same individual makes the point vividly; but the violation of human equality, freedom, and dignity is present even in a single planned clone’.4Valparaiso University Law Review, 32(2), 697.Kass, L. R. (1998). The wisdom of repugnance: Why we should ban the cloning of humans.  An example of the latter is Carson Strong, who argued that in certain circumstances it would be ethical for infertile couples to resort to cloning, as a way of having kin that were genetically related to one of them.5Cambridge Quarterly of Healthcare Ethics, 7(3), 279–293.Strong, C. (1998). Cloning and infertility. After the birth of Dolly scientists around the world started to try to clone other mammals, and up to this date cats, coyotes, camels, dogs, goats, horses, mice, monkeys, pigs, rabbits and rats have already been cloned. Furthermore, one consequence of Dolly’s birth was that people got even more interested in the question of whether human beings does not fit our folk conception of genetic parenthood. According to this folk conception, the person who provided the egg and the person who provided the sperm, which fused and created an embryo, are the genetic parents of the created embryo. Cloning is problematic because in it no sperm and egg fuse, and thus the question of who are the genetic parents of any given clone arise: (a) the person who provided the nuclear DNA, or (b) the progenitors of the person who provided the nuclear DNA. Interestingly, Leon Kass noticed that reproductive cloning complicated our traditional understanding of human reproduction: ‘Asexual reproduction, which produces “single‐parent” offspring, is a radical departure from the natural human way, confounding all normal understandings of father, mother, sibling, grandparent, etc., and all moral relations tied thereto.’6Kass, op. cit., note 4, p. 690.One issue that becomes patent when we reflect on the possibly of employing human cloning for ‘reproductive purposes’ is that cloning 7Journal of Medical Ethics, 40(11), 744–447.Mertes, H. (2014). Gamete derivation from stem cells: Revisiting the concept of genetic parenthood.  aims to solve the question of who are the genetic parents of an individual created through cloning. They defend the view that the progenitors of the nuclear DNA provider are the clone’s genetic parents. In this article I critically examine Douglas and Devolder’s new account of genetic parenthood. Firstly, I show that Douglas and Devolder draw an incorrect conclusion when they apply their new account of genetic parenthood to answer the question of whether an egg donor is a genetic parent, in cases where the egg used in the reproductive procedure has been enucleated . Secondly, I demonstrate their account is vulnerable to counterexamples that exploit the absence of a condition specifying that genetic parents should cause the child’s coming into existence.In a recent publication Tom Douglas and Katrien Devolder have proposed a new account of genetic parenthood. Their account, which builds on the work of Heidi Mertes,The article proceeds as follows. In the second section I briefly present and explain why previous accounts of genetic parenthood are flawed. In the third section I present Douglas and Devolder’s new account of genetic parenthood and show that they draw the wrong conclusion when faced with cases where an egg has been enucleated for a reproductive purpose. In the fourth, and final, section I present a case that shows that their account of genetic parenthood is found wanting.28Ibid, p. 744.[A] child is my genetic child when it has 50% of my DNA or when it has 23 of my chromosomes. This 50% overlap of genetic material is, for example, what is looked into when performing a paternity or maternity test.In this section I review the accounts of genetic parenthood that Heidi Mertes investigated in her article ‘Gamete Derivation from Stem Cells: Revisiting the Concept of Genetic Parenthood’; and explain why they are found wanting. I begin with Mertes, as Douglas and Devolder do likewise. The first account that she presents can be named the informational account of genetic parenthood:There are several problems with this account, as it focuses on information overlap. Foremost, under it my siblings would be my genetic parents and vice versa. This would be the case as I share 50% of the information contained in my genetic nuclear material with my siblings. Furthermore, it can also be the case that I share 50% of my nuclear DNA, in the informational sense, with someone who is not a close relative of mine, and that would entail that she is my genetic child or parent.9Cambridge Quarterly of Healthcare Ethics, 12(4), 401–410.Kolers, A. (2003). Cloning and genetic parenthood.  can be named the Direct Derivation Account of genetic parenthood: ‘X is a genetic child of Y if X is directly derived from Y’s genes’.10Mertes, op. cit., note 7, p. 744.A more promising account, which Mertes discusses and which was first presented by Avery Kolers,causal relationship; the offspring is as it is because of its relationship to its parents, whereas the inverse is not true’.11Kolers, op. cit., note 9, p. 402. Mertes contends that the problem with this account is that it leads to counterintuitive conclusions when we examine two reproductive cloning cases.12In what follows I will bracket the question whether the egg donor, for the cloning procedure, is a genetic parent under the Direct Derivation Account. I do so as I will expand on this issue later on. Let us, following Douglas and Devolder, call the first case the Cloned Child:13Mertes, op. cit., note 7, p. 745.[A] couple (Mr and Mrs X) may become infertile after already having conceived one genetically related child (Y). As they long for a second child, they opt to clone their existing child Y, which results in the birth of Z.The direct derivation condition rules out the possibility of my siblings being my genetic parents, as I was not directly derived from them, and vice versa. As Kolers asserts: ‘[d]erivation is fundamentally a are not the genetic parents of Z. They are not so as Z was not directly derived from their genes. On the other hand, Y is the genetic parent of Z, as Z was directly derived from Y’s genes. Nevertheless, according to Mertes, in this scenario ‘it is most likely that Mr and Mrs X will “feel” like the genetic parents of Z, whereas Y is unlikely to think of herself as Z’s mother.’ Let us now consider the second case that Mertes presents, that I will call Cloned Parent, also following Douglas and Devolder: ‘Mr and Mrs X decide to clone Mr X instead of Y, resulting in child Q.’14Ibid.According to the Direct Derivation Account, Mr and Mrs X only genetic parent of Q. He is so as Q’s genes were directly derived only from Mr X. Now, Mertes notices that in this case the nuclear DNA provider and the clone15Ibid.do not share 50% of DNA, but 100%. The people who would pass [in Cloned Parent] a maternity/paternity test would be the genetic parents of Mr X. In this second scenario, both Mr X and his parents might consider themselves as Q’s genetic parents and both would have good arguments (either a contribution of 50% DNA or direct derivation) to support their claim.According to the Direct Derivation Account, Mr X is the contradictory intuitions on similar cloning scenarios. On the one hand, in Cloned Child we seem to support the idea that the progenitors of the nuclear DNA provider are the genetic parents of the clone. But on the other hand, in Cloned Parent we seem to support the idea that the nuclear DNA provider is the genetic parent of the clone. Of course, holding both statements as true at the same time is contradictory.The overall issue here, according to Mertes, is that we have 16Ibid. Let us now move to Douglas and Devolder’s account of genetic parenthood.After presenting these two cloning cases Mertes does not bite the bullet and accept that, in Cloned Child, Z’s genetic parent is Y. And she also does not try to revise the Direct Derivation Account in order to solve this purported contradiction in our intuitions. What she does is assert that these two cases show that ‘[t]here is no fixed, scientific, everlasting criterion of genetic parenthood that everyone can agree upon’ and that ‘the term genetic parenthood is not value‐free, but dependent on personal intuitions, intentions or judgements’.317Bioethics, 33(1), 54–59, p. 4.Douglas, T., & Devolder, K. (2018). A conception of genetic parenthood.  Rather than falling for this subjectivist account of genetic parenthood they propose a new account, one that can deal with the Cloned Child and the Cloned Parent cases. But importantly, their account is intended to be one ‘that captures the concept of genetic parenthood implicit in everyday usage’.18Ibid, p. 1. Before engaging with Douglas and Devolder’s account, it is important to notice that they do not start from Mertes’s presentation of the Direct Derivation Account, but rather from a revised version of it: ‘Direct Genetic Descent: P is C’s genetic parent if and only if (a) C’s genes derived from P’s genes, and (b) not through deriving from the genes of some third, intervening individual, M.’19Ibid, p. 3.Douglas and Devolder contend that Mertes’s conclusion about genetic parenthood is premature, in the sense that she has not shown that genetic parenthood is ‘a subjective concept that depends on the views of people about what sorts of genetic relation matter’.20Ibid.Suppose a sperm from P1 is used to fertilize an egg from P2. The resulting zygote then has its DNA removed and replaced by DNA from some other individual T. This zygote is then carried to term and eventually a child, C, is born. There is a sense in which C derives directly from P1 and P2’s genes; those genes governed the development of gametes, which created a zygote from which C developed. But C’s genes do not derive from P1 and P2’s genes, they derive instead from T’s genes, and this surely prevents P1 and P2 from qualifying as C’s genetic parents.They start from this revised version in order to avoid a possible counterexample:21Ibid, p. 4.Direct Gametic Genetic Descent: P is C’s genetic parent if and only if (a) C’s genes derived from P’s genes, (b) through a gamete produced by P, and (c) not through deriving from the genes of some third, intervening individual, M.Douglas and Devolder’s Direct Genetic Descent, which is a revised version of Mertes’s presentation of the Direct Derivation Account, runs into the same issues mentioned above when we consider the Cloned Parent and Cloned Child cases. Now, Douglas and Devolder offer a refined version of Direct Genetic Descent, which seems to answer the question of who are the clone’s genetic parents, while at the same time maintaining the concept of genetic parenthood implicit in everyday usage:is not a genetic parent of the clone. In such cases he or she is not a genetic parent as the clone was not derived from one of their gametes. In Cloned Child, Y, who is the nuclear DNA provider, is not the genetic parent of clone Z. And in Cloned Parent, Mr X, who is the nuclear DNA provider, is not the genetic parent of Q.Douglas and Devolder here introduce the condition that the genetic derivation must be via a gamete produced by the intending genetic parent. Thus it follows from this account that the nuclear DNA provider, in cloning cases where the enucleated egg does not come from said nuclear DNA provider, 22Ibid. Let us remember that, broadly speaking, mitochondrial replacement techniques are those where the nuclear DNA of the intending mother (or intending parents) is transferred from an egg (or zygote) with deleterious mitochondrial DNA mutations, to an enucleated egg (or zygote) that possesses healthy mitochondria.23Bioethics. 31(1), 27–36.Palacios‐González, C. (2017). Ethics of mitochondrial replacement techniques: A Habermasian perspective.  It is also relevant to bear in mind that mitochondrial DNA corresponds to, roughly, 0.1% of the whole DNA content of the human organism.Douglas and Devolder also conclude, following the Direct Gametic Genetic Descent account, that in cases where we employ a mitochondrial replacement technique the egg donor is not a genetic parent of the created child. Direct Gametic Genetic Descent ‘also allows us to evade the conclusion that P3  is the genetic parent of C4  in Mitochondrial Donation.’is a genetic parent. Why? Because the child’s mitochondrial genes were derived from the egg donor’s genes (Douglas and Devolder does not specify if there is a minimum of genes that must be transmitted for someone to classify as a genetic parent), from a gamete produced by the egg donor, and not by deriving such genes from the mitochondrial genes of some third, intervening individual, M. And the same rationale would apply to the egg donor in cases of reproductive cloning: she would be a genetic parent of the clone, regardless of the fact if she is also the nuclear DNA provider.Douglas and Devolder are mistaken in their application of Direct Gametic Genetic Descent to mitochondrial replacement techniques cases. In such an account the egg donor for a mitochondrial replacement technique 24Douglas & Devolder, op. cit., note 17, p. 5.Stricto sensu Douglas and Devolder are incorrect. The clones created in Cloned Child and Cloned Parent have at least one genetic parent: the egg donor.Now, Douglas and Devolder assert that from Direct Gametic Genetic Descent it follows that neither of the clones (i.e. Q and Z) has genetic parents: Direct Gametic Genetic Descent ‘implies that the clones created in Cloned Child and Cloned Parent lack any genetic parents, since their genomes were not inherited via gametes’.25Ibid. If this were ever to happen then, under direct gametic genetic descent, we would have to accept that any resulting child from this biotechnology, let us call it (following Douglas and Devolder) Two‐Donor Genome Transplantation, would not have genetic parents. Yet it seems that in this case A and B would be the genetic parents.Bracketing the previous issue regarding egg donors, Douglas and Devolder assert that Direct Gametic Genetic Descent is not only problematic because the clones would not have genetic parents, which they do. They contend that Direct Gametic Genetic Descent is flawed because there are other cases that are ‘closer to those of normal human reproduction’ that also create problems for such an account. As a point in case, imagine that the following is possible: we enucleate a zygote, and we replace its nuclear material with the genetic material obtained from two somatic cells taken from individuals A and B. In this case each individual contributes 50% of the nuclear DNA material.26Ibid.P is C’s genetic parent if and only if (a) some proportion X of C’s genes derived from P’s genes and (b) not through deriving from the genes of some third, intervening individual, M.In order to solve the problem posed by Two‐Donor Genome Transplantation, Douglas and Devolder propose to replace the condition of genetic inheritance via gametes with a condition of genetic inheritance of some determined proportion from parent to child. They call their new account Direct Proportionate Genetic Descent:nuclear DNA, then under this account the nuclear DNA provider is not the clone’s genetic parent. And if proportion X were to be > 0.1% of the whole DNA then the egg donor, in cases where we employ maternal spindle transfer, for example, would not be a genetic parent. Now, the upshot of the Direct Proportionate Genetic Descent account is that it does not entail the absurd conclusion that in Two‐Donor Genome Transplantation the resulting child has no genetic parents. According to this account A and B would be the child’s genetic parents. This would be the case if the proportion of genetic material established by this account (i.e. X) is set to include the proportion that obtains in cases of sexual reproduction.If proportion X, which they do not specify, were to be <100% of the 27Ibid.However, Direct Proportionate Genetic Descent remains too stringent in the cases of Cloned Child and Cloned Parent, for it continues to imply that the clones produced in these cases have no genetic parents – an implication that Mertes and Sparrow find implausible.Even though Direct Proportionate Genetic Descent can accommodate certain counterexamples, Douglas and Devolder maintain that according to it the clones created in Cloned Parent and Cloned Child still do not have genetic parents:does not necessarily follow from their account. It does not do so as proportion X could be a proportion of genetic material in the range between 50% and 100%. The fact that the nuclear DNA provider passes ‘too much’ of her genetic material does not rule her out from being a genetic parent in principle. Regardless of how we solve the previous point, under Direct Proportionate Genetic Descent the genetic parents of the nuclear DNA provider (i.e. the parents of Mr X and Y) cannot be regarded as the genetic parents of the clone (i.e. Q and Z); as in such cases they – the genetic parents of the nuclear DNA provider – are the ‘third intervening individual’.It is important to note that this conclusion do not have genetic parents. In the previous paragraph I have shown that this ‘softening’ is not necessary, but adopting such solution would entail abandoning the concept of human genetic parenthood implicit in everyday usage. The way in which Douglas and Devolder weaken Direct Proportionate Genetic Descent is by abandoning the idea that there cannot be a third intervening individual. Now they accept that in some instances there can be a third individual involved in the reproductive endeavour. But, interestingly, this third individual is not a genetic parent, but what can be described as a bridge between progenitors and descendants. For example, in Cloned Child case they ‘propose that the intervening individual (C1) does not break the genetic parenthood relation  in this case because she passes on too much of her genetic information to C2 [emphasis added]’.28Ibid. Douglas and Devolder formalize their revised account as follows:Modified Direct Proportionate Genetic Descent: P is C’s genetic parent if and only if (a) some proportion X of C’s genes derived from P’s genes and (b) not through deriving from the genes of some third, intervening individual M from whom C derived proportion Y of his genes.29Ibid.Douglas and Devolder contend that it is possible to revisit the conditions established in Direct Proportionate Genetic Descent and soften them, so we arrive at an account of genetic parenthood that does not conclude that in Cloned Parent and Cloned Child the clones proportion of genes’ will most probably not be a set figure but rather a range, and that this range could have fuzzy boundaries. Before I show why this account of genetic parenthood is found wanting, it is relevant to mention that according to it egg donors, both for cloning and mitochondrial replacement procedures, are not in principle ruled out as genetic parents. Why? Because, as stated above, the authors do not specify the proportion of genes that must be transmitted for someone to classify as a genetic parent. If the proportion were ≥ 0.1% of the whole DNA content of the human organism then the egg donor would be the genetic parent of the resulting child. This would be so as the mitochondrial genes of any resulting child would have been derived from the egg donor’s genes, and not at all through some third intervening individual M.30I thank an anonymous reviewer for bringing this point to my attention.Douglas and Devolder accept that ‘the 4causation condition built into their account. In order to appreciate this issue consider the following case, which I will call ‘Genome Editing ’. Alfred and Betty want to have a child. They have been unsuccessful in achieving their goal through sexual intercourse, as both of Betty’s fallopian tubes are completely blocked. Alfred and Betty decide to resort to Charles, a fertility expert. Charles prescribes Betty some fertility drugs and then proceeds to surgically retrieve her eggs. Once the eggs have been retrieved he uses Alfred’s sperm in order to carry out in vitro fertilization, and zygote E is produced. After the IVF procedure Charles does not transfer the zygote back to Betty, but rather he lets it grow in his lab for 3 days. On the fourth day Charles uses a Genome Editing technique in order to modify E’s cells. In this case he inserts 10% of his own nuclear genes into E’s cells. Finally, Charles transfers the genetically modified embryo to Betty, and after some months E is born.Even if Douglas and Devolder’s account avoids what they consider to be a counterintuitive conclusion , they run into a more severe problem for not having a is not his genetic parent, as he does not satisfy condition (a). But, Charles becomes E’s genetic parent per means of a Genome Editing technology when E is 4 days old. This is the case as 10% of E’s genes were derived from Charles’ genes, and not through deriving them from the genes of some third intervening individual.According to Modified Direct Proportionate Genetic Descent both Alfred and Betty are E’s genetic parents, if ‘proportion X’ is set to include a range between 5% and 50% of the total nuclear material. They are so in that 45% of E’s nuclear genes were derived from each one of them, and not through deriving from the genes of some third intervening individual. The question to answer now is whether Charle, the fertility doctor, is E’s genetic parent. When E is first created Charles becomes E’s genetic parent shows that there is something wrong with Modified Direct Proportionate Genetic Descent. The problem is that this account allows for an adult to become the genetic parent of an already existing individual; and this cuts against one of the necessary conditions of genetic parenthood: that one is one of the material causes of an individual coming into existence. Adopting a stance that maintains that such a causation condition is not necessary entails a radical revisionism of the concept of genetic parenthood, a revisionist position that needs to be defended.The fact that Charles 31Metaphilosophy, 38(2–3), 153–169.Devolder, K., & Harris, J. (2007). The ambiguity of the embryo: Ethical inconsistency in the human embryonic stem cell debate.  There are three ways in which I can address this objection. Firstly, I could show that early embryos are in fact individuals, but I do not have enough space to defend such a view (see Mathew Liao (2010) for a defence of such position).32Ratio, 23(1), 59–72.Liao, S. M. (2010). Twinning, inorganic replacement, and the organism view.  Secondly, my case could just be recast as referring to embryos that have passed the point where twining is possible. Third, Genome Editing works in non‐embryonic cases as well. Imagine that rather than being a 3‐day old embryo, E is a 1‐year old baby. If Charles were to edit his genome, at that point, so that now 10% of E’s genome derived from Charles then Charles, again, would become E’s genetic parent, but this is absurd.At this point someone could present two objections to my Genome Editing case. First, they could argue that given that early embryos can twin they are not individuals, in the sense of being unified biological organisms, and thus Genome Editing does not show that such an account is found wanting.becomes the genetic parent of an already existing individual, this is not so because replacing 10% of E’s genes would destroy E and create a new individual F.33I thank an anonymous reviewer for raising this objection. In other words, E’s numerical identity would not survive the extent of such procedure. If this were so then Charles would be the genetic parent of the recently created individual F, in as much as 10% of F’s genes derived from Charles’ genes and not through deriving them from some third intervening individual. According to this objection Genome Editing does not even get off the ground.The second objection holds that in Genome Editing it is not the case that Charles 34The Monist, 89(3), 334–350.Liao, S. M. (2006). The organism view defended. a) X begins to exist when the capacity to regulate and coordinate metabolic and other life processes is there; b) X persists as long as there is what may be called ‘organismic continuity,’ which is the continuing ability to regulate and coordinate metabolic and other life processes; and c) X ceases to exist when the capacity to regulate and coordinate metabolic and other life processes is permanently gone.In order to respond to this objection the first thing I need to do is provide an account of what an organism is. According to Liao, a being X is essentially an organism if35Genome Biology and Evolution, 9(7), 1880–1885.Graur, D. (2017). An upper limit on the functional fraction of the human genome.  This means that Charles could edit 10% of E’s non‐coding DNA, and this would not affect E’s capacity to regulate and coordinate metabolic and life processes thus, also, not affecting E’s numerical identity. Furthermore, my response to this second objection holds true even if it were to be the case that the findings of the Encyclopedia of DNA Elements project, which were able to assign biochemical functions to 80% of the genome, were true.36Nature, 489(7414), 57–74.The ENCODE Project Consortium. (2012). An integrated encyclopedia of DNA elements in the human genome.  Let me finish by saying that Genome Editing shows that Douglas and Devolder’s Modified Direct Proportionate Genetic Descent account of genetic parenthood is presently found wanting, and that they need to do more work in order for it to be a plausible account of genetic parenthood.Now, it could be the case that all our DNA is necessarily required for the capacity to regulate and coordinate metabolic and life processes to be there; and thus, if some of it were to be replaced by similar DNA, but from a different origin, then the original capacity to regulate and coordinate would be destroyed and a new capacity would be created. Even when it is intuitively appealing the former is incorrect. According to recent research 75% of our DNA is non‐coding DNA.


The second largest Ebola virus disease (EVD) epidemic in history is currently raging in Eastern Democratic Republic of Congo (DRC). Stubbornly persistent EVD transmission has been associated with social resistance, ranging from passive non-compliance to overt acts of aggression toward EVD reponse teams.We explored community resistance using focus group discussions and assessed the prevalence of resistant views using standardized questionnaires.Despite being generally cooperative and appreciative of the EVD response , focus group participants provided eyewitness accounts of aggressive resistance to control efforts, consistent with recent media reports. Mistrust of EVD response teams was fueled by perceived inadequacies of the response effort (“herd medicine”), suspicion of mercenary motives, and violation of cultural burial mores (“makeshift plastic morgue”). Survey questionnaires found that the majority of respondents had compliant attitudes with respect to EVD control. Nonetheless, 78/630 (12%) respondents believed that EVD was fabricated and did not exist in the area, 482/630 (72%) were dissatisfied with or mistrustful of the EVD response, and 60/630 (9%) sympathized with perpetrators of overt hostility. Furthermore, 102/630 (15%) expressed non-compliant intentions in the case of EVD illness or death in a family member, including hiding from the health authorities, touching the body, or refusing to welcome an official burial team. Denial of the biomedical discourse and dissatisfaction/mistrust of the EVD response were statistically significantly associated with indicators of social resistance.social resistance to EVD control efforts was prevalent among focus group and survey participants. Mistrust, with deep political and historical roots in this area besieged by chronic violence and neglected by the outside world, may fuel social resistance. Resistant attitudes may be refractory to short-lived community engagement efforts targeting the epidemic but not the broader humanitarian crisis in Eastern DRC.We concluded that  Ebola virus disease (EVD) is a lethal, infectious hemorrhagic fever that occurs in outbreaks in equatorial Africa . The 201The ongoing EVD epidemic has prompted questions as to what may be driving the persistent transmission. Active conflict, high population density, large numbers of internally displaced persons (IDPs), and mass migrations have been identified as promoting factors . In addiThe objective of this study was to explore social resistance to EVD control efforts during the current persistent outbreak in Eastern DRC. We collected qualitative data through focus group discussions (FGDs), and quantitative data via survery questionnaire, sampling the active EVD transmission region of Butembo and its surrounding communities. Findings from this mixed-methods study may inform public health messaging and control efforts in this challenging epidemic.We conducted a mixed-methods study with qualitative (FGDs) and quantitative (18 item survey questionnaire) data collection. Mixed-methods research seeks to integrate and triangulate findings from qualitative and quantitative methods. Its pragmatic focus contrasts with methodologic purism . CompareEven prior to the EVD outbreak, the DRC has been the stage of a complex humanitarian crisis that has lasted decades and is characterized by mortality rates 70% higher than pre-war levels, and 55% greater than neighboring sub-Saharan African countries . ViolentParticipants of FGDs and survey questionnaires were purposively selected (convenience sample) from the geographic regions affected by the EVD epidemic. Key informants included nurses and clinicians, community members in the cities/villages of Béni, Butembo, and Mangina, as well as IDPs in the Komanda camp. Each FGD had a mixed composition of these key informants. FGDs were conducted in the fourth month of the epidemic, during a peak in EVD transmission. Participants were 18 years of age or older.FGDs were conducted in the local languages  by one of the study authors experienced in FGD methodology (KMC). FGDs included 5 participants in each group and lasted approximately 45 minutes each . ParticiAn 18-item questionnaire was developed, based on past questionnaires used in Guinea and the DRC , 20 and Perceived risk of EVD. Participants were asked to identify whether they felt they were at high, intermediate or low risk of contracting EVD, as in a previous EVD survey . The ETC is well guarded, so the community attacked the health post that transferred the patient to the ETC.” According to FGD pariticpants, the EVD response in Butembo was characterized by a highly visible, apparently well-financed, but poorly trusted foreign element, including both foreign Congolese nationals (from other areas of the DRC) and international workers. One FGD participant emphasized the importance of local trusted sources of information and leadership over formal media  by outsiders:étrangers au milieu [strangers in our midst] because of money didn’t take this aspect into consideration.” “Everyone has a leader that he has confidence in. These de bouche à l’oreille [from mouth to the ear] in an informal manner.” “The training should have been done The foreign effort was seen as ineffectual in some instances:Kinois [person from country capital Kinshasa] in Lingala. And that, what impact do you think it will have?” “A Béninois will do his messaging in French, a The handling of corpses  was viewed as alien and was a source of dissatisfaction reported by FGD participants, and cited as a reason for community resistance to control efforts:“It’s also a problem of culture. No, really, the way of handling the body is horrible. Our culture doesn’t tolerate this. The body is considered like a thing, an object.” “The body… is wrapped in a tarp. No one from the family sees the body. Our culture demands that we say goodbye to the one that goes ahead of us to the beyond. It’s a powerful moment for us.” une morgue de fortune en caoutchouc [a makeshift plastic morgue].” “Separation from the sick relative, possibly indefinite, was not easily tolerated. Moreover, seeing the patient before and after death was important to family members:“A loved one falls ill, he goes to the ETC, that’s it. You will never see him again or better let’s say it’s a separation without possibility of seeing each other again.” “A funeral without saying goodbye to the deceased!! That is a curse, that is.”FGD participants cited poor quality of care in the ETC as a reason for failing to present to a treatment centre when EVD is suspectedInadequacies of the EVD response were frequent explanations for community and local health worker dissatisfaction:“The medications are not sufficient. We are still scared because the process is slow for these visitors here to be able to believe in what you are telling them. They don’t believe people.” “Everyone wants [the vaccine]. And according to the criteria, only those who were in contact with the suspected cases. And it’s a procedure to verify the veracity of the claims of someone who is asking for the vaccine.” “We informed the health authorities of [city]… but no one answered the phone. Finally, having informed the team, they told us that they would come the next day. Because of the security risk, no travel at night. The body stayed at the health centre without an equipped morgue.” Protocolized medicine by foreign teams was seen as callous and impersonal:médecine de troupeau [herd medicine]. When a sheep is sick, well, you have to treat all the sheep in the same way. It’s not individualized medicine on a case-by-case basis, no.” “[NGO] is doing protocole figé [rigid frozen protocol]. EVD patient equals protocol…” “[NGO] has a “For [NGO], the objective is to limit the epidemic, isolate the sick. Even if he dies, no problem, so long as he doesn’t contaminate others.” EVD control efforts were largely staffed by national and international foreign personnel, and there was a perception among FGD participants that little effort was made to engage local medical personnel. Initially keen to be involved in the EVD response, one local health worker felt under-valued and disengaged from the foreign-led control efforts:“Understanding what is going on is difficult. Me, I quit just a week into it. I was recruited. I arrived in Béni, I didn’t even know whom to speak to. One person says go there, and another says something else. Finally, we start. Now I pay for my own accommodation. I pay for my own food. They tell me, you have to be in [name of town] (30 km away from [name of town] where I was staying) at 6am in the morning. And then in the morning there was no means of transportation. I take a motorcycle, and the evening, the same thing. So look, I left. People are de-motivated… And if the local people disengage from the process, well it will be a serious humanitarian catastrophe.” Local health workers were suspicious that national EVD staff were motivated by financial gain. Perceived disparities in local and foreign payscales were keenly felt:Kinois [workers from Kinshasa], which is ‘no EVD, no job.’ The Kinois have come in large numbers, they are afraid of the risk and their remuneration is high relative to that of the locals who in addition are sacrificing themselves for the community. The locals are poorly paid, and that’s the reason for a lot of people quitting. Have you ever heard of a Kinois who quit? The disparities are striking and we’ve even written a memo to the authorities. If some locals remain, it’s out of patriotism, a volunteer spirit.” “We can read the spirit of the “…[despite deaths and infections], unfortunately without hazard pay. The government should think about their case.” “As for the health personnel without hazard pay, it’s total fear around cases like these.” Beyond perceived mercenary motives and inadequacies of care, a troubling suggestion of genocidal intent of the foreign presence arose in several FGDs:“The message that the politicians are giving is that EVD is a creation come to exterminate the population of [name of town]. People are manipulated and hold to this.” In this context, some precautionary policies were misinterpreted, such as withholding a perceived life-saving vaccine from a vulnerable group, pregnant women:“for example, they are refusing the vaccine to pregnant women, yet we know that pregnant women are always vaccinated to protect the babies. We are asking if this policy is not a way to exterminate us.” In contrast to the care provided by outsider teams, stories of heroism by local health workers emerged in FGDs. One healthcare worker, himself infected and admitted to the ETC, recounted the way he cared for other patients, filling perceived gaps in the medical treatment provided under the “protocol”:“We helped each other out, mutually. Truth be told, there were others sicker than I was, very weakened…We treated the sick in the ETC. Personally, I bathed another patient who had EVD like me. It was a colleague. Emptying his chamberpot. He had no strength. We reconnected the drips of patients who were psychologically overcome who had disconnected theirs. We communicated with our colleagues who were outside by telephone… We told them the medication needs (requests) and they would throw them to us. We helped a lot of sick people in the face of this [NGO] protocol that doesn’t adapt to the case-by-case.” A total of 670 participants were surveyed between 3 and 20 November, 2018. The median age was 23 years (range 18–67) and 298 (43%) were female. Participant characteristics are shown in Denial was expressed by 78 (12%) participants and was examined as a possible determinant of social resistance . Five quA majority of respondents (72%) agreed or strongly agreed with universal (rather than targeted) vaccination. In addition, 77% agreed that community engagement was critical to ending the EVD epidemic. High levels of agreement with these statements were consistent across age and sex strata and were not associated with markers of dissatisfaction or mistrust .Sixty (9%) participants expressed support for overt acts of hostility to the EVD response team. Factors associated with this putative indicator of resistance are shown in Through FGDs and survey questionnaires, we sought to understand social resistance to EVD control efforts, which may explain, at least in part, the stubbornly persistent transmission in Eastern DRC. Our qualitative data support findings from the current  and prevReticence to comply with early isolation of sick patients, vaccination, and safe burial may provide a window for ongoing EVD transmission. In our survey questionnaire, 15% of participants endorsed one or more non-compliant intentions if one of their family members was ill or died of EVD , referred to as “strangers in our midst” by one FGD participant, were assumed to be well-paid, displayed visible wealth (hired vehicles), took minimal risks, rarely got infected, and rarely quit. Delays in responding to potentially infected patients and corpses, together with the sluggish roll-out of interventions such as vaccine were therefore sometimes cynically interpreted as an attempt to draw out the epidemic for personal gain . For some participants, this created a sharp contrast between local health workers, undervalued and poorly rewarded yet paying a high toll of illness from treating the sick, and the foreign nationals, viewed as mercenaries profiteering from the epidemic. Likewise, in Sierra Leone in 2014–16, “all sorts of interest groups mushroomed overnight to collect cash from the Health Ministry” [Another source of animosity in our study was the perception of “disaster capitalism” as a driving motive of the national response team. Based on survey questionnaires, the view that foreign response teams had a profit motive was held by 127/630 (20%) of respondents . The Kininistry” , and coninistry” . More geinistry” , describinistry” . SimilarA majority (77%) of survey respondents agreed or strongly agreed that the epidemic would persist as long as local communities are not engaged. In FGDs, some local health workers, initially keen to be involved, were quickly disillusioned with a lack of support  and had disengaged from the control efforts. Similarly, in the 2014–16 outbreak, community actors were engaged late in the response, did not receive sufficient support , and intBeyond passive non-compliance, FGD participants recounted acts of overt hostility from community members. Corroborating these eyewitness accounts, news reports of community members blocking health workers from taking patients to the ETC , infecteOur study is subject to several limitations. Survey questionnaire items were adapted from prior studies , 20; howSeveral recommendations emerge from our study that may inform current and future EVD responses. First, international agencies should aspire to a more sustained and wholistic approach to public health issues that matter to the community. The intense, vertical, and focused EVD response during this epidemic has not been well accepted in part because the community is unaccustomed to external aid and suspicious of disingenuous motives. This might serve to build a foundation of trust upon which foreign assistance in an epidemic or crisis situation could build. Second, strong communication and dialogue with community members in the local language should be foundational; language barrier was highlighted as a failing of the EVD response among FGD participants. Third, engaging trusted local experts  for public health messaging and case management should receive more emphasis. The response was characterized by a belief that local physicians and nurses “lacked the capacity” to deal with an EVD outbreak. Rather than build local capacity, the emphasis was on emergency containment, which ultimately became counter-productive as communities resisted the “top-down” control effort. Finally, real-time data collection, capturing emergent, on-the-ground, local barriers and facilitators  should bAnthropologic research during other EVD epidemics suggests that root causes of resistance or reticence relate to several domains, including rumours, fear, mistrust and lack of confidence in the authorities, and denial of the biomedical discourse , 11, 42.S1 FileTable A. Translation of quotations from French  to English. Quotations are presented in the same order that they appear in the Results Section. Table B. Correlation between questionnaire items related to dissatisfaction with Ebola response and/or mistrust of the Ebola response team. Agreement with all statements was quantified using an ordinal Likert scale from 1 to 5. Table C. Correlation between questionnaire items related to intentions to comply with Ebola control measures in case of Ebola illness or death in a family member.(DOCX)Click here for additional data file.