John Lynch

The Origins of Bioethics argues that what we remember from the history of medicine and how we remember it are consequential for the identities of doctors, researchers, and patients in the present day. Remembering when medicine went wrong calls people to account for the injustices inflicted on vulnerable communities across the twentieth century in the name of medicine, but the very groups empowered to create memorials to these events often have a vested interest in minimizing their culpability for them. Sometimes these groups bury this past and forget events when medical research harmed those it was supposed to help. The call to bioethical memory then conflicts with a desire for “minimal remembrance” on the part of institutions and governments. The Origins of Bioethics charts this tension between bioethical memory and minimal remembrance across three cases—the Tuskegee Syphilis Study, the Willowbrook Hepatitis Study, and the Cincinnati Whole Body Radiation Study—that highlight the shift from robust bioethical memory to minimal remembrance to forgetting.
https://www.amazon.com/Origins-Bioethics-Remembering-Medicine-Rhetoric/dp/1611863414
https://www.facebook.com/OriginsBioethicsMemory

Concerns about the ethical and social implications of genetics persist as more applications of genetic and genomic technology have become available. Pediatric testing for genetic influences on response to opioids like codeine is one area of application. We interviewed parents of children enrolled in a mixed-methods study following the communication of actual or hypothetical results for CYP2D6, which impacts opioid response. Forty-one parents of children naive to opioids and 42 parents of children previously exposed to opioids participated in qualitative interviews. Findings did not differ by the child's opioid exposure or by actual versus hypothetical results. Parents' responses centered on the experience of the parent(s) and the potential impact of that information on the parent, rather than the result's impact on the child. Parents also emphasized that the results did not impact their perceptions of the child, reaffirming that the child was still "normal" reg...

Family health history (FHH) can identify families at increased risk for disease. Purpose. To learn mothers’ (1) perceptions of the benefits of FHH and (2) willingness to complete a FHH tool, My Family Health Portrait (MFHP). Methods. Qualitative in-depth interviews were conducted with mothers recruited through Cincinnati Children’s Hospital. Deductive and inductive codes were developed. Results. A total of 25 mothers were interviewed. Perceived benefits included keeping the pediatrician informed (n = 12; 48%) and preventive screenings recommended based on FHH (n = 10; 40%). Participants had positive impressions of MFHP and felt that it was user-friendly (n = 17; 68%). Lack of FHH knowledge was the most common challenge to completing MFHP, but most respondents stated that they would be able to complete MFHP prior to their child’s medical appointment (n = 23; 92%). Conclusion. Mothers are interested in and may be motivated to complete a parent-generated FHH prior to a pediatric appoin...

This paper discusses how the American public accounts for the concerns that they have about genetic research and the benefits that they foresee. We develop a general framework for discussing public claims about genetic technology based on Stephen Toulmin's model of warrants in argumentation. After a review of the results from public opinion polls about genetic research, we present a focus group study of public understandings of genetics. We outline the warrants, or publicly accepted "good reasons", that this group offers for accepting some aspects of genetic technology and for rejecting other aspects. The warrants presented by the public in their discussion of genetic research indicate that the public has a complex, informed understanding of genetic research, albeit a non-technical one. The paper concludes with a discussion of the importance of public participation in debates over genetic research and the ways that researchers and policymakers could adapt to public concerns about genetics.

Debates over medicine and biotechnology have often had recourse to science fiction narratives. One narrative, Aldous Huxley's Brave New World, is unique in that both proponents and opponents of research treated references to the novel as a legitimate rhetorical strategy. This essay uses debates from 1998 to 2003 over embry-onic stem cell research and cloning to illustrate two types of references to Huxley's novel. Allusions to the novel identify the presence and salience of ethical concerns, acting as an opening gambit in public discourse. Allegorical uses yoke the novel to a narrow pretext of conservative bioethics. After identifying the contours of allusion and allegory, this essay argues for eschewing allegory in order to preserve a rhetorical commonplace for public discourse on medicine and biotechnology.

Acceptance of lesbian, gay, and bisexual (LGB) individuals by Christian churches has been uneven at best, with renewed condemnation following each progressive step. Yet LGB Christians remain in denominations whose attitudes toward their sexuality range from mere tolerance to outright condemnation. To make sense of this, we turn to the case of the Rev. Beth Stroud who came out as a lesbian in a 2003 sermon she delivered at the First United Methodist Church of Germantown, Pennsylvania. Stroud turned to Christian and queer images of family that blurred the lines between family and community, and she used a metonymy of " making casseroles " to encourage the congregation to engage in an array of inclusive community building practices. By crafting images of queer family and mobilizing them alongside calls for tactics that create inclusive communities, Stroud's language highlights the potential for crafting an accepting and inclusive Christian community that might help those LGB and queer persons whose lives are imbricated in the church.

As more research studies incorporate next-generation sequencing (including whole-genome or whole-exome sequencing), investigators and institutional review boards face difficult questions regarding which genomic results to return to research participants and how. An American College of Medical Genetics and Genomics 2013 policy paper suggesting that pathogenic mutations in 56 specified genes should be returned in the clinical setting has raised the question of whether comparable recommendations should be considered in research settings. The Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network are multisite research programs that aim to develop practical strategies for addressing questions concerning the return of results in genomic research. CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research participant has consented to return, genomic results, along with referral for appropriate clinical follow-up, should be offered to participants. However, participants have a right to decline the receipt of genomic results, even when doing so might be viewed as a threat to the participants' health. Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results. These positions are consistent with the recognition that clinical research is distinct from medical care in both its aims and its guiding moral principles.

As more research studies incorporate next-generation sequencing (including whole-genome or whole-exome sequencing), investigators and institutional review boards face difficult questions regarding which genomic results to return to research participants and how. An American College of Medical Genetics and Genomics 2013 policy paper suggesting that pathogenic mutations in 56 specified genes should be returned in the clinical setting has raised the question of whether comparable recommendations should be considered in research settings. The Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network are multisite research programs that aim to develop practical strategies for addressing questions concerning the return of results in genomic research. CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research participant has consented to return, genomic results, along with referral for appropriate clinical follow-up, should be offered to participants. However, participants have a right to decline the receipt of genomic results, even when doing so might be viewed as a threat to the participants’ health. Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results. These positions are consistent with the recognition that clinical research is distinct from medical care in both its aims and its guiding moral principles.

Journalism has been a key site for communicating science, and public relations departments at universities and research hospitals are a vital institutional link between science and journalism. Located betwixt scientific demands for didactic explanations of science and journalistic desire for interesting stories, biomedical public relations writing juggles competing rhetorical demands. This study shows that press releases favor the concerns of internal scientific audiences over journalistic audiences. Yet stories that provide journalistic appeals to application are more likely to gain a journalist’s attention, although journalists will then develop their own appeals to application to incorporate into the story.

Conflicts of interest can impact the integrity of scientific research. While public imagination has focused on scientists, regulatory discourse recognizes a broader range of individuals who might have financial COIs. This essay asks, for personnel who enroll subjects at a physical and organizational remove from the primary research team, whether reporting COI to an institutional review board or COI committee protects research integrity. After examining definitions of COI, regulations on COI, and rubrics for evaluating COI policies, we argue that requiring recruitment personnel working at a distance from the primary research team to report potential COI protects neither research integrity nor human subjects.