Ethics of ‘Counting Me In’: framing the implications of direct-to-patient genomics research

Journal of Medical Ethics 50 (1):45-49 (2024)
  Copy   BIBTEX

Abstract

Count Me In (CMI) was launched in 2015 as a patient-driven research initiative aimed at accelerating the study of cancer genomics through direct participant engagement, electronic consent and open-access data sharing. It is an example of a large-scale direct-to-patient (DTP) research project which has since enrolled thousands of individuals. Within the broad scope of ‘citizen science’, DTP genomics research is defined here as a specific form of ‘top-down’ research endeavour developed and overseen by institutions within the traditional human subjects research context; in novel ways, it engages and recruits patients with defined diseases, consents them for medical information and biospecimens sharing, and stores and disseminates genomic information. Importantly, these projects simultaneously aim to empower participants in the research process while increasing sample size, particularly in rare disease states. Using CMI as a case study, this paper discusses how DTP genomics research raises new questions in the context of traditional human subjects research ethics, including issues surrounding participant selection, remote consent, privacy and return of results. It aims to demonstrate how current research ethics frameworks may be insufficient in this context, and that institutions, institutional review boards and investigators should be aware of these gaps and their role in ensuring the conduct of ethical, novel forms of research together with participants. Ultimately, a broader question is raised of whether the rhetoric of participatory genomics research advocates for an ethic of personal and social duty for contributing to the advancement of generalisable knowledge about health and disease.

Other Versions

No versions found

Links

PhilArchive

    This entry is not archived by us. If you are the author and have permission from the publisher, we recommend that you archive it. Many publishers automatically grant permission to authors to archive pre-prints. By uploading a copy of your work, you will enable us to better index it, making it easier to find.

    Upload a copy of this work     Papers currently archived: 102,546

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Contemporary issues for protecting patients in cancer research: workshop summary.Sharyl J. Nass - 2014 - Washington, D.C.: The National Academies Press. Edited by Margie Patlak.
Understanding Incidental Findings in the Context of Genetics and Genomics.Mildred K. Cho - 2008 - Journal of Law, Medicine and Ethics 36 (2):280-285.

Analytics

Added to PP
2023-05-03

Downloads
30 (#773,078)

6 months
10 (#364,029)

Historical graph of downloads
How can I increase my downloads?