Eric T. Juengst

Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

Interest in whole-genome research has grown substantially over the past few months. This article explores the challenging ethics issues associated with this work.

Group identity and human diversity: keeping biology straight from culture.

As the international effort to map the human genome matures, scientific interest in using that map to evaluate the genetic differences among human groups is growing (Collins et al. 1997). It recently has become popular (and politically important) to argue that this new interest in what might be called “population genomics” puts at risk significant interests of the groups under study and that those groups therefore should be involved in the decision to conduct any study that would use individual genotyping to generate information about the group as a whole (North American Regional Committee of the Human Genome Diversity Project 1995; Knoppers et al.

Biogerontology, “Anti‐aging Medicine,” and the Challenges of Human Enhancement

Slowing the aging process would be one of the most dramatic and momentous ways of enhancing human beings. It is also one that mainstream science is on the brink of pursuing. The state of the science, together with its possible impact, make it an important example for how to think about research into all enhancement technologies.

Enhancing cognition in the intellectually intact.

As science learns more about how the brain works, and fails to work, the possibility for developing cognition enhancers becomes more plausible. And the demand for drugs that can help us think faster, remember more, and focus more keenly has already been demonstrated by the market success of drugs like Ritalin, which tames the attention span, and Prozac, which ups the competitive edge. The new drug Aricept, which improves memory, most likely will join them. Whether such drugs are good for individuals, or for society, is an open question, one that demands far more public discussion.

Ethical issues in identifying and recruiting participants for familial genetic research.

Family‐based research is essential to understanding the genetic and environmental etiology of human disease. The success of family‐based research often depends on investigators ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the tension between protecting participants privacy and promoting research quality, and guidelines for these activities are not well established. The Cancer Genetics Network Bioethics Committee assembled a multidisciplinary group to explore the scientific and ethical issues that arise in the process of family‐based recruitment. The group used a literature review as well as expert opinion to develop recommendations about appropriate approaches to identifying, contacting, and recruiting family members. We conclude that there is no single correct approach, but recommend a balanced approach that takes into account the nature of the particular study as well as its recruitment goals. Recruitment of family members should be viewed as part of the research protocol and should require appropriate informed consent of the already‐enrolled participant. Investigators should inform prospective participants why they are being contacted, how information about them was obtained, and what will happen to that information if they decide not to participate. The recruitment process should also be sensitive to the fact that some individuals from families at increased genetic risk will have no prior knowledge of their risk status. These recommendations are put forward to promote further discussion about the advantages and disadvantages of various approaches to family‐based recruitment. They suggest a framework for considering alternative recruitment strategies and their implications, as well as highlight areas in need of further empirical research.

Can genomics tell me who i am? Essentialistic rhetoric in direct-to-consumer DNA testing

Recently, a high number of companies have emerged that offer online direct-to-consumer DNA testing. We investigate these consumer genomics companies through the lens of identity. We find that many of them appeal to a kind of “genetic essentialism”. We suggest that this appeal is key to understanding why consumers are attracted to their services. There seem to be three very different currents within contemporary culture at work: the pre-modern search for a naturalistic understanding of identity, the modern enthusiasm for science, and the post-modern emphasis on radical individual self-determination. The support for our hypothesis comes from the companies websites and the online testimonials of satisfied customers. We discuss the risk of distortion of the subjective experience of identity due to unreliable or uninformative test results, inadequate or misleading explanation, and the fact that the science is still too weak to yield meaningful results.

Big data, open science and the brain: lessons learned from genomics

The BRAIN Initiative aims to break new ground in the scale and speed of data collection in neuroscience, requiring tools to handle data in the magnitude of yottabytes (1024). The scale, investment and organization of it are being compared to the Human Genome Project (HGP), which has exemplified “big science” for biology. In line with the trend towards Big Data in genomic research, the promise of the BRAIN Initiative, as well as the European Human Brain Project, rests on the possibility to amass vast quantities of data to model the complex interactions between the brain and behavior and inform the diagnosis and prevention of neurological disorders and psychiatric disease. Advocates of this “data driven” paradigm in neuroscience argue that harnessing the large quantities of data generated across laboratories worldwide has numerous methodological, ethical and economic advantages, but it requires the neuroscience community to adopt a culture of data sharing and open access to benefit from them. In this article, we examine the rationale for data sharing among advocates and briefly exemplify these in terms of new “open neuroscience” projects. Then, drawing on the frequently invoked model of data sharing in genomics, we go on to demonstrate the complexities of data sharing, shedding light on the sociological and ethical challenges within the realms of institutions, researchers and participants, namely dilemmas around public/private interests in data, (lack of) motivation to share in the academic community, and potential loss of participant anonymity. Our paper serves to highlight some foreseeable tensions around data sharing relevant to the emergent “open neuroscience” movement.

Antiaging medicine and mild cognitive impairment: practice and policy issues for geriatrics.

The claim that aging itself is treatable or even preventable has repeatedly been made over the centuries. Antiaging medicine is the current leader of approaches that even claim that geriatrics as a discipline will become increasingly unnecessary. The concept of mild cognitive impairment (MCI) as a condition intermediate between normal cognitive aging and Alzheimers disease highlights the conceptual and practical difficulty of differentiating aging from disease. What should geriatricians and their organizations make of scientifically mainstream attempts to decelerate, arrest, or compress aspects of the normal human aging, including the brain aging process? This article reviews the political, philosophical, practice‐related, and economical implications of antiaging medicine for geriatrics using MCI as a practical example. It concludes by suggesting actions that geriatricians should consider to strengthen their profession and to improve patient care in response to the challenges of longevity medicine.

Thresholds and Boundaries in the Disclosure of Individual Genetic Research Results

Most contemporary “gene-hunting” begins as bench science in molecular genetics and often has relatively indirect connections with the kinds of clinical services that are relevant to the education a...

Commentary: What “Community Review” Can and Cannot Do

The author praises Sharp and Fosters differentiation of the forms of community review, and agrees that the discussion is far from settled. He argues that rather than attempting to define community by various criteria, it might be more helpful to both researchers and research subjects to enable persons to create their own communities: a process of community construction, rather than reaction.