Fairness as an afterthought: An American perspective on fairness in model developer-clinician user collaborations.

Numerous ethics guidelines have been handed down over the last few years on the ethical applications of machine learning models. Virtually every one of them mentions the importance of "fairness" in the development and use of these models. Unfortunately, though, these ethics documents omit providing a consensually adopted definition or characterization of fairness.

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.

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.

"I think we've got too many tests!": Prenatal providers' reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening.

Background: The recent introduction of cell-free DNA-based non-invasive prenatal screening (cfDNA screening) into clinical practice was expected to revolutionize prenatal testing. cfDNA screening for fetal aneuploidy has demonstrated higher test sensitivity and specificity for some conditions than conventional serum screening and can be conducted early in the pregnancy. However, it is not clear whether and how clinical practices are assimilating this new type of testing into their informed consent and counselling processes.

Great expectations: autism spectrum disorder and induced pluripotent stem cell technologies.

New applications of iPSC technology to research on complex idiopathic conditions raise several important ethical and social considerations for potential research participants and their families. In this short review, we examine these issues through the lens of emerging research on autism spectrum disorder (ASD). We begin by describing the current state of iPSC technology in research on ASD.

Ethical, Legal and Social Issues Surrounding Research on Genetic Contributions to Anti-Social Behavior.

Scientific study of genetic contributions to chronic antisocial behavior has stemmed from many lines of research in recent years. Genetic research involving twin, family, and adoption studies have traditionally been used to compare the health and behavior outcomes of individuals who share the same environment or hereditary lineage; several of these studies have concluded that heredity plays some role in the formation of chronic antisocial behavior, including various forms of aggression and chronic norm-defiance. However, the ethical, social, and legal environment surrounding research on the biological contributions to antisocial behavior in the United States is contentious.

The race is on: human embryonic stem cell research goes global.

More nations are joining the human embryonic stem cell (hESC) "race" by aggressively publishing in the peer-reviewed journals. Here we present data on the international use and distribution of hESC using a dataset taken from the primary research literature. We extracted these papers from a comprehensive dataset of articles using hESC and human induced pluripotent stem cells (hiPSC).

Democracy derived? New trajectories in pluripotent stem cell research.

How has the development of human induced pluripotent stem cells (hiPSCs) modified the trajectory of stem cell research? Here, coauthorship networks of stem cell research articles and analysis of cell lines used in stem cell research indicate that hiPSCs are not replacing human embryonic stem cells, but instead, the two cell types are complementary, interdependent research tools. Thus, we conclude that a ban on funding for embryonic stem cell research could have unexpected negative ramifications on the nascent field of hiPSCs.

Direct-to-consumer advertising in black and white: racial differences in placement patterns of print advertisements for health products and messages.

If direct-to-consumer advertising (DTCA) increases consumer participation in healthcare, then it may provide a useful strategy for addressing health disparities, in part, where patient-level barriers have contributed to such disparities. However, this presumes equitable access to DTCA. Using mixed methods, we explored advertisement patterns in matched African American and general audience magazines across a range of genres and ad types.

Perceived medical discrimination and cancer screening behaviors of racial and ethnic minority adults.

Background: Discrimination has been shown as a major causal factor in health disparities, yet little is known about the relationship between perceived medical discrimination (versus general discrimination outside of medical settings) and cancer screening behaviors. We examined whether perceived medical discrimination is associated with lower screening rates for colorectal and breast cancers among racial and ethnic minority adult Californians.

Methods: Pooled cross-sectional data from 2003 and 2005 California Health Interview Survey were examined for cancer screening trends among African American, American Indian/Alaskan Native, Asian, and Latino adult respondents reporting perceived medical discrimination compared with those not reporting discrimination (n = 11,245).

Racial, cultural, and ethnic factors influencing end-of-life care.

Past efforts in the palliative and end-of-life care field have been laudably directed at increasing the cultural competence of providers and institutions and improving outreach to multicultural communities. Today, however, we face new challenges with regard to racial, cultural, and ethnic factors at the end of life. We now have documented evidence of disparities in almost every area of health care.

Hyped biomedical science or uncritical reporting? Press coverage of genomics (1992-2001) in Québec.

Genomics integrates the promises and perils of modern biomedical science. Canada and the province of Québec embarked late but aggressively in genomics research based on the 'discourse of promise' in which genomics is embedded. This did not prevent the emergence of a 'discourse of concerns', and debates on the wider meaning of genomics and on the risks related to genomics applications such as gene therapy and gene testing.

Qualitative methods in end-of-life research: recommendations to enhance the protection of human subjects.

Qualitative research has the potential to contribute important new knowledge to care near the end of life, but research is often hampered by questions about how best to protect dying patients and their family members who serve as research subjects. Due to lack of familiarity with the techniques of ethnographic or observational research, as well as concerns about the vulnerability of the dying, members of Institutional Review Boards (IRBs) are often unable to evaluate the benefits and potential harms of studies. In addition, policies derived from standards based on interventional medical research or clinical trials may be applied inappropriately.

Claims and disclaimers: whose expertise counts?

Medical anthropologists have long recognized that interactions between state, clinical, scientific and lay participants transform understandings of illness. There are competing claims to knowledge in such interactions, which may be in tension with concepts of jurisdictional authority and assumptions about what constitutes different types of expertise. This paper focuses on the regulatory processes of the Food and Drug Administration in order to examine the social processes involved in negotiating and sustaining domains of knowledge across various boundaries of authority.

Conflicts of interest in magnetic resonance imaging: issues in clinical practice and research.

In the use of magnetic resonance imaging (MRI) in medicine and in the conduct of MRI research, conflicts of interest are routinely generated. These conflicts are not necessarily unique to MRI and are not necessarily considered malpractice or misconduct. It is important, however, for clinicians and researchers to understand what constitutes a conflict of interest and how to mitigate the potential adverse effects of those conflicts on patients and on the integrity of research.

Strategies for culturally effective end-of-life care.

As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering.