Recommendations for ethical approaches to genotype-driven research recruitment

Recruiting research participants based on genetic information generated about them in a prior study is a potentially powerful way to study the functional significance of human genetic variation. However, it also presents significant ethical challenges that, to date, have received only minimal consideration. We convened a multi-disciplinary workshop to discuss key issues relevant to the conduct and oversight of genotype-driven recruitment and to translate those considerations into practical policy recommendations. Workshop participants were invited from around the U.S., and included genomic researchers and study coordinators, research participants, clinicians, bioethics scholars, experts in human research protections, and government representatives. Discussion was directed by experienced facilitators and informed by empirical data collected in a national survey of IRB chairs and in-depth interviews with research participants in studies where genotype-driven recontact occurred. A high degree of consensus was attained on the resulting 7 recommendations, which cover informed consent disclosures and choices, the process for how and by whom participants are recontacted, the disclosure of individual genetic research results, and the importance of tailoring approaches based on specific contextual factors. These recommendations are intended to represent a balanced approach—protecting research participants, yet avoiding overly restrictive policies that hinder advancement on important scientific questions

Research Participants' Perspectives on Genotype-Driven Research Recruitment

Genotype-Driven Recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, “information is valuable,” and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally

Advancing HIV research with pregnant women: navigating challenges and opportunities

Concerns about including pregnant women in research have led to a dearth of evidence to guide safe and effective treatment and prevention of HIV in pregnancy. To better understand why these evidence gaps persist and inform guidance for responsible inclusion of pregnant women in the HIV research agenda, we aimed to learn what HIV experts perceive as barriers and constraints to conducting this research

Simplification and Shift in Cognition of Political Difference: Applying the Geometric Modeling to the Analysis of Semantic Similarity Judgment

Perceiving differences by means of spatial analogies is intrinsic to human cognition. Multi-dimensional scaling (MDS) analysis based on Minkowski geometry has been used primarily on data on sensory similarity judgments, leaving judgments on abstractive differences unanalyzed. Indeed, analysts have failed to find appropriate experimental or real-life data in this regard. Our MDS analysis used survey data on political scientists' judgments of the similarities and differences between political positions expressed in terms of distance. Both distance smoothing and majorization techniques were applied to a three-way dataset of similarity judgments provided by at least seven experts on at least five parties' positions on at least seven policies (i.e., originally yielding 245 dimensions) to substantially reduce the risk of local minima. The analysis found two dimensions, which were sufficient for mapping differences, and fit the city-block dimensions better than the Euclidean metric in all datasets obtained from 13 countries. Most city-block dimensions were highly correlated with the simplified criterion (i.e., the left–right ideology) for differences that are actually used in real politics. The isometry of the city-block and dominance metrics in two-dimensional space carries further implications. More specifically, individuals may pay attention to two dimensions (if represented in the city-block metric) or focus on a single dimension (if represented in the dominance metric) when judging differences between the same objects. Switching between metrics may be expected to occur during cognitive processing as frequently as the apparent discontinuities and shifts in human attention that may underlie changing judgments in real situations occur. Consequently, the result has extended strong support for the validity of the geometric models to represent an important social cognition, i.e., the one of political differences, which is deeply rooted in human nature

Participant experiences of mindfulness-based childbirth education: a qualitative study

Background: Childbirth is an important transitional life event, but one in which many women are dissatisfied stemming in part from a sense that labour is something that happens to them rather than with them. Promoting maternal satisfaction with childbirth means equipping women with communication and decision making skills that will enhance their ability to feel involved in their labour. Additionally, traditional antenatal education does not necessarily prepare expectant mothers and their birth support partner adequately for birth. Mindfulness-based interventions appear to hold promise in addressing these issues. Mindfulness-based Child Birth Education (MBCE) was a pilot intervention combining skills-based antenatal education and Mindfulness Based Stress Reduction. Participant experiences of MBCE, both of expectant mothers and their birth support partners are the focus of this article. Methods: A generic qualitative approach was utilised for this study. Pregnant women between 18 and 28 weeks gestation, over 18 years of age, nulliparous with singleton pregnancies and not taking medication for a diagnosed mental illness or taking illicit drugs were eligible to undertake the MBCE program which was run in a metropolitan city in Australia. Focus groups with 12 mothers and seven birth support partners were undertaken approximately four months after the completion of MBCE. Audio recordings of the groups were transcribed verbatim and analysed thematically using the method of constant comparison by all four authors independently and consensus on analysis and interpretation arrived at through team meetings.Results: A sense of both ‘empowerment’ and ‘community’ were the essences of the experiences of MBCE both for mothers and their birth support partner and permeated the themes of ‘awakening my existing potential’ and ‘being in a community of like-minded parents’. Participants suggested that mindfulness techniques learned during MBCE facilitated their sense of control during birth, and the content and pedagogical approach of MBCE enabled them to be involved in decision making during the birth. The pedagogical approach also fostered a sense of community among participants which extended into the postnatal period. Conclusions: MBCE has the potential to empower women to become active participants in the birthing process, thus addressing common concerns regarding lack of control and satisfaction with labour and facilitate peer support into the postnatal period. Further education of health professionals may be needed to ensure that they respond positively to those women and birth support partners who remain active in decision making during birth

Applied thematic analysis

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