Barriers to diverse clinical trial participation in Duchenne muscular dystrophy: Engaging Hispanic/Latina caregivers and health professionals.

Background: Despite the increasing availability of clinical trials in Duchenne muscular dystrophy, racial/ethnic minorities and other populations facing health disparities remain underrepresented in clinical trials evaluating products for Duchenne. We sought to understand the barriers faced by Hispanic/Latino families specifically and underrepresented groups more generally to clinical trial participation in Duchenne.

Methods: We engaged two participant groups: Hispanic/Latino caregivers of children with Duchenne in the US, including Puerto Rico, and health professionals within the broader US Duchenne community.

Beware of the phony horserace between genes and environments.

Although Burt provides a valuable critique of the scientific value of integrating genetic data into social science research, she reinforces rather than disrupts the age-old horserace between genetic effects and environmental effects. We must move past this false dichotomy to create a new ontology that recognizes the ways in which genetic and environmental processes are inextricably intertwined.

Wrestling with Public Input on an Ethical Analysis of Scientific Research.

Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might-and might not- be gained from engaging the public in normative scholarship and on lessons learned about public perspectives on the risks and potential benefits of SBG research and the responsible conduct and communication of such research.

Wrestling with Social and Behavioral Genomics: Risks, Potential Benefits, and Ethical Responsibility.

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often-ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science-including genomewide association studies and polygenic indexes-can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research.

"The elephant in the room": social responsibility in the production of sociogenomics research.

Sociogenomics examines the extent to which genetic differences between individuals relate to differences in social and economic behaviors and outcomes. The field evokes mixed reactions. For some, sociogenomics runs the risk of normalizing eugenic attitudes and legitimizing social inequalities.

Ethical, anticipatory genomics research on human behavior means celebrating disagreement.

Despite the many social and ethical considerations in human genetics, researchers and communities remain largely siloed as for-profit, direct-to-consumer genetic testing and the application of polygenic scores to fertilization services become increasingly prevalent. The multifaceted challenges facing genomics, both empirical and ethical, require collaborations that foster critical dialogue and honest debate between communities inside and outside the research enterprise. This piece argues that in order to respond to the premature or inappropriate use of genomic data in industry, the scientific community needs to first embrace, understand, and be in dialogue about its disagreements.

Social Equality in an Alternate World.

Genes have long been used to validate social inequality. The Genetic Lottery: Why DNA Matters for Social Equality, by Kathryn Paige Harden, attempts not only to reclaim genetic research on human behavior from its eugenic past but also to argue that genetic research can be used to understand and enhance social equality. This review essay illustrates why embracing a political agenda in which genetics matter for social equality will not in practice advance efforts to reduce social inequality.

FoGS provides a public FAQ repository for social and behavioral genomic discoveries.

Here we introduce ‘FAQs on Genomic Studies’ (FoGS), an open-access repository of explanatory documents that accompany genomic analyses in social and behavioral genomics. For fields such as social and behavioral genomics that are shaped by an ugly history and uncertain future, socially and ethically responsible research and research communication are crucial. FoGS amplifies one such approach towards responsible research communication.

Genes do not operate in a vacuum, and neither should our research.

It’s time for a paradigm shift in the scientific enterprise. Our social responsibilities, especially as stakeholders in a field such as genetics, are central to the responsible conduct of research.