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Transplant Genomics: Ethical, Legal, and Social Implications

By Tamar Schiff

The appeal of precision medicine is of particular significance in transplantation. Treatment options are already integrally dependent on genetic factors – the donor-recipient match – and the demand for transplantable tissues far outstrips the available supply.

And the potential is only growing. Advances in genetic and genomic studies have identified an increasing number of novel biomarkers of potential use in transplant-related care. These include predictors of disease course, graft survival, response to immunosuppression, and likelihood of disease recurrence or other complications.

With wider availability of sequencing technologies and innovations in databanking, future clinical applications in transplant care may require ever-growing considerations of the significance of genetic variants, fair access to precision medicine therapeutics and participation in research, ethical approaches to data aggregation, and social determinants of health.

The interplay of these elements crosses disciplinary lines and compels concerns of utility, equity, privacy, consent, and adherence to best practices:

  • When and how should genomic testing impact transplant eligibility and allocation? What will it mean if there are not uniform practices around genetic testing and return of results in transplant centers across the country
  • How may genomic testing affect or perpetuate health disparities in the transplant community? Non-white racial and ethnic groups comprise a minority of transplant recipients in the United States. Will the gap only widen with further inequities in recruitment and access to genomics research and its clinical applications?
  • What constitutes proper informed consent for genomic sequencing in the context of the transplant donor or recipient evaluation? How should this genetic data then be regulated, stored, and analyzed? And as practice evolves, how should genetic counseling be incorporated into peri-transplant clinical care?

These are only a few of the unique ethical, legal, and social issues emerging at the intersection of translational genomics and transplant clinical care. This evolving discourse will require the input of a spectrum of relevant stakeholders, from patients to payors, and expertise across a broad range of scholarly fields.

The Transplant Ethics and Policy Research program at the NYU Grossman School of Medicine Division of Medical Ethics invites you to join us for an afternoon conference to begin engaging these issues. This free FASEB Catalyst Conference will be held 1:00-5:30pm on January 27, 2021 and will feature presentations, moderated panel discussions, and Q&A sessions.

A full conference agenda is available here; there is no fee for attendance, please register here.

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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