Ethical considerations in biobanks: how a public health ethics perspective sheds new light on old controversies.
- Authors
- Virani, Alice Hawkins; Longstaff, Holly
- Year
- 2015
- Journal
- Journal of genetic counseling
- PMID
- 25348083
- DOI
- 10.1007/s10897-014-9781-9
Biobanks, collections of biospecimens with or without linked medical data, have increased dramatically in number in the last two decades. Their potential power to identify the underlying mechanisms of both rare and common disease has catalyzed their proliferation in the academic, medical, and private sectors. Despite demonstrated public support of biobanks, some within the academic, governmental, and public realms have also expressed cautions associated with the ethical, legal, and social (ELSI) implications of biobanks. These issues include concerns related to the privacy and confidentiality of data; return of results and incidental findings to participants; data sharing and secondary use of samples; informed consent mechanisms; ownership of specimens; and benefit sharing (i.e., the distribution of financial or other assets that result from the research). Such apprehensions become amplified as more researchers seek to pursue national and cross-border collaborations between biobanks. This paper provides an overview of two of the most contentious topics in biobank literature - informed consent and return of individual research results or incidental findings - and explores how a public health ethics lens may help to shed new light on how these issues may be best approached and managed. Doing so also demonstrates the important role that genetic counselors can play in the ongoing discussion of ethically appropriate biobank recruitment and management strategies, as well as identifies important areas of ongoing empirical research on these unresolved topics.
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In this knowledge base
| Title | Year | PMID |
|---|---|---|
| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | 2017 | 28240821 |
External
| Title | Authors | Journal | Year | Link |
|---|---|---|---|---|
| '<i>It is a complex process, but it's very important to return these results to participants'</i>. Stakeholders' perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. | Nabukenya S et al. | — | 2024 | → |
| Ethics and governance of trustworthy medical artificial intelligence. | Zhang J et al. | — | 2023 | → |
| The promise of public health ethics for precision medicine: the case of newborn preventive genomic sequencing. | Newson AJ | — | 2022 | → |
| Current Status and Future Challenges of Biobank Research in Malaysia. | Amin L et al. | — | 2021 | → |
| Diverse experts' perspectives on ethical issues of using machine learning to predict HIV/AIDS risk in sub-Saharan Africa: a modified Delphi study. | Nichol AA et al. | — | 2021 | → |
| Ethics in Research: Relevance for Nephrology. | Nichol AA et al. | — | 2021 | → |
| Aspects of Modern Biobank Activity - Comprehensive Review. | Paskal W et al. | — | 2018 | → |
| Ethics and Genetics: Examining a Crossroads in Nursing Through a Case Study . | Beamer LC | — | 2017 | → |
| Moral Duties of Genomics Researchers: Why Personalized Medicine Requires a Collective Approach. | Vos S et al. | — | 2017 | → |
| Returning Results: Let's Be Honest! | Elger BS et al. | — | 2017 | → |
| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | Dick DM et al. | — | 2017 | → |
| "Still Rather Hazy at Present": Citizens' and Physicians' Views on Returning Results from Biobank Research Using Broad Consent. | Barazzetti G et al. | — | 2017 | → |
| If you build it, they will come: unintended future uses of organised health data collections. | O'Doherty KC et al. | — | 2016 | → |
| What Potential Donors in Research Biobanking Want to Know: A Large Population Study of the Italian Twin Registry. | Toccaceli V et al. | — | 2016 | → |
| ESR Position Paper on Imaging Biobanks. | European Society of Radiology (ESR) | — | 2015 | → |