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Are Parents Really Obligated to Learn as Much as Possible about Their Children’s Genomes?

October 31, 2018

As new parents quickly learn, parenting always involves choosing your battles. Ideally, parents have the freedom to make those moral choices without the prejudice of an unreasonable or premature inflicted ought. Resolving the predictive uncertainties of genomic information is the professional responsibility of the biomedical community, just as clarifying the impact of global warming or … Read more

CEDG and HEC Welcome Mark Baumgarten and Tyler Clay

October 26, 2018

Mark Baumgarten and Tyler Clay will join the Clinical Ethics Discussion Group as student leaders, and the Hospital Ethics Committee as student members, in January 2019. Center for Bioethics faculty members Arlene Davis and Eric Juengst are advisors to the student group and Arlene Davis co-chairs the Hospital Ethics Committee.   Mark Baumgarten grew up in … Read more

Why Does the Shift from “Personalized Medicine” to “Precision Health” and “Wellness Genomics” Matter?

September 26, 2018

Efforts to conceptualize the application of human genomics to health care have displayed an evolving set of translational research goals. Under personalized genomic medicine, the aim was to individualize treatment and empower patients to take more responsibility for their own health. With the rise of interest in expert interpretation of multifactorial risk stratification, emphasis shifted … Read more

Grudging Trust and the Limits of Trustworthy Biorepository Curation

May 1, 2018

Kraft and colleagues (2018) present an analysis of focus groups assembled to provide guidance on governance practices for biorepository-based research initiatives like the National Institutes of Health (NIH) All of Us Research Program of the Precision Medicine Initiative. They emphasize respondents’ interests in institutional structures and research relationships that go “beyond informed consent” and suggest that … Read more

Including All Voices in International Data-Sharing Governance

March 19, 2018

Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing … Read more

Crowdsourcing the Moral Limits of Human Gene Editing?

May 1, 2017

In 2015, a flourish of “alarums and excursions” by the scientific community propelled CRISPR/Cas9 and other new gene-editing techniques into public attention. At issue were two kinds of potential gene-editing experiments in humans: those making inheritable germ-line modifications and those designed to enhance human traits beyond what is necessary for health and healing. The scientific … Read more

From “Personalized” to “Precision” Medicine

December 20, 2016

Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”-one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to … Read more

Citizen Science or Scientific Citizenship?

December 20, 2016

BACKGROUND: The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more … Read more

A Semiquantitative Metric for Evaluating Clinical Actionability of Incidental or Secondary Findings From Genome-Scale Sequencing

December 20, 2016

PURPOSE: As genome-scale sequencing is increasingly applied in clinical scenarios, a wide variety of genomic findings will be discovered as secondary or incidental findings, and there is debate about how they should be handled. The clinical actionability of such findings varies, necessitating standardized frameworks for a priori decision making about their analysis. METHODS: We established … Read more

Looking for Trouble

December 20, 2016

Advances in genomics have led to calls for developing population-based preventive genomic sequencing (PGS) programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the … Read more