Emily Borgelt

Personal medicine—the new banking crisis

As the healthcare industry moves from a twentieth century approach of providing treatments of last resort to a future of individualized medicine, biobanks will play a pivotal role in this transition. Yet at the cutting edge of biobanking research are new ethical, social and policy challenges beyond those familiar to basic biomedical research.

Neurobiological narratives: experiences of mood disorder through the lens of neuroimaging

Many scientists, healthcare providers, policymakers and patients are awaiting in anticipation the application of biomedical technologies such as functional neuroimaging for the prediction, diagnosis and treatment of mental disorders. The potential efficacy of such applications is controversial, and functional neuroimaging is not yet routinely used in psychiatric clinics. However, commercial ventures and enthusiastic reporting indicate a pressing need to engage with the social and ethical issues raised by clinical translation. There has been little investigation of how individuals living with mental illness view functional neuroimaging, or of the potential psychological impacts of its clinical use. We conducted 12 semi-structured interviews with adults diagnosed with major depression or bipolar disorder, probing their experiences with mental health care and their perspectives on the prospect of receiving neuroimaging for prediction, diagnosis and planning treatment. The participants discussed the potential role of neuroimages in (i) mitigating stigma; (ii) supporting morally loaded explanations of mental illness due to an imbalance of brain chemistry; (iii) legitimising psychiatric symptoms, which may have previously been de-legitimised since they lacked objective representation, through objective representations of disorder; and (iv) reifying DSM-IV-TR disorder categories and links to identity. We discuss these anticipated outcomes in the context of participant lived experience and attitudes to biologisation of mental illness, and argue for bringing these voices into upstream ethics discussion.

Protecting Posted Genes: Social Networking and the Limits of GINA

The combination of decreased genotyping costs and prolific social media use is fueling a personal genetic testing industry in which consumers purchase and interact with genetic risk information online. Consumers and their genetic risk profiles are protected in some respects by the 2008 federal Genetic Information Nondiscrimination Act (GINA), which forbids the discriminatory use of genetic information by employers and health insurers; however, practical and technical limitations undermine its enforceability, given the everyday practices of online social networking and its impact on the workplace. In the Web 2.0 era, employers in most states can legally search about job candidates and employees online, probing social networking sites for personal information that might bear on hiring and employment decisions. We examine GINAs protections for online sharing of genetic information as well as its limitations, and propose policy recommendations to address current gaps that leave employees’ genetic information vulnerable in a Web-based world.

In Search of “Anything That Would Help”: Parent Perspectives on Emerging Neurotechnologies

Objective: This qualitative study explores parents’ perceptions about the future clinical translation of neurotechnologies—neuroimaging and genetic testing separately and together—for instrumentalization in the diagnosis and treatment of childhood ADHD. Method: We conducted in-person, semi-structured interviews with parents of minor children diagnosed with ADHD (N = 26) and analyzed 11.75 hr of data using constant comparative analysis. Results: Receptivity to technology and anticipation of potential benefits overshadowed discussion of risks or concerns. Four key areas of potential impact on parent experience are (a) insight and acceptance, (b) treatment and adherence, (c) stigma and blame, and (d) the endeavor to access resources. Conclusion: The findings highlight high receptivity to emerging neurotechnologies for ADHD, key areas for which parents anticipate support from these technologies, and ethics challenges to clinical translation in light of parents’ salient hope and minimal consideration of risk in their pursuit of “anything that would help.”

Neuroimaging in mental health care: voices in translation.

Images of brain function, popularly called “neuroimages,” have become a mainstay of contemporary communication about neuroscience and mental health. Paralleling media coverage of neuroimaging research and the high visibility of clinics selling scans is pressure from sponsors to move basic research about brain function along the translational pathway. Indeed, neuroimaging may offer benefits to mental health care: early or tailored intervention, opportunities for education and planning, and access to resources afforded by objectification of disorder. However, risks of premature technology transfer, such as misinterpretation, misrepresentation, and increased stigmatization, could compromise patient care. The insights of stakeholder groups about neuroimaging for mental health care are a largely untapped resource of information and guidance for translational efforts. We argue that the insights of key stakeholders—including researchers, healthcare providers, patients, and families—have an essential role to play upstream in professional, critical, and ethical discourse surrounding neuroimaging in mental health. Here we integrate previously orthogonal lines of inquiry involving stakeholder research to describe the translational landscape as well as challenges on its horizon.

Brain imaging: Incidental findings: in practice and in person

Prospective research participants, patients and consumers are faced with a cacophony of information about the risks and benefits of brain scans. In light of new data on incidental findings, the professional community has a duty to explicitly and systematically encourage questions that promote rational decision-making and informed choice.

The time is ripe for an ethics of entrepreneurship

volume 32 NumBeR 4 APRIl 2014 nature biotechnology transplantation, to more fully mimic the Berlin patient protocol, and thereby evaluate whether a graft-versus-reservoir effect is necessary for full eradication. Meanwhile, the differing outcomes for both the Berlin and Boston patients, although highlighting the pernicious nature of the HIV-1 reservoirs and the formidable challenges that HIV-1 eradication strategies face, also provide impetus for the continued development of therapeutic interventions that include the introduction of HIV-resistant cells.

Erratum: Personal medicine[mdash]the new banking crisis

In the version of the article originally published, the citation in Figure 1 was given as ref. 14; it should be ref. 2. In Table 1, CARTaGENE was misspelled, and the descriptions in column 3 of this repository, BioVu’s and the International HapMap were incorrect: CARTaGENE should be described as “A repository of socio-demographic, health data and biological samples from 20,000 citizens of the province of Quebec in Canada”; BioVu’s description should read “Repository of DNA samples and de-identified health information from the Vanderbilt University Medical Center’s electronic system”; and the International HapMap description should read “International collaboration with the ultimate goal of developing a haplotype map of the human genome.” In addition, the amount of the Havasupai settlement was incorrectly stated to be

Incidental findings: in practice and in person

700 million. It should read

Genetic Testing and Neuroimaging for Youth at Risk for Mental Illness: Trading off Benefit and Risk

700,000. Finally, the work of Simon et al. (ref. 8) on biobank consent models was incorrectly described. The text should read, “For example, a recent US focus group and survey study found a public that preferred a broad approach to consent over ones involving additional choices. But the preference was marginal, thus noting the lack of consensus on these issues. Indeed, as noted by the authors of the study: ‘54% of our survey and 42% of our focus group participants could be seen as preferring a control/choice-promoting model (e.g., categorical or study-specific consent) over a control/choice demoting model (e.g., broad consent)8’.” The errors have been corrected in the HTML and PDF versions of the article.