VOOZH about

URL: https://pubmed.ncbi.nlm.nih.gov/26979405/

⇱ Lessons from HeLa Cells: The Ethics and Policy of Biospecimens - PubMed


Clipboard, Search History, and several other advanced features are temporarily unavailable.
Skip to main page content
👁 Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

👁 Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Abstract

Human biospecimens have played a crucial role in scientific and medical advances. Although the ethical and policy issues associated with biospecimen research have long been the subject of scholarly debate, the story of Henrietta Lacks, her family, and the creation of HeLa cells captured the attention of a much broader audience. The story has been a catalyst for policy change, including major regulatory changes proposed in the United States surrounding informed consent. These proposals are premised in part on public opinion data, necessitating a closer look at what such data tell us. The development of biospecimen policy should be informed by many considerations-one of which is public input, robustly gathered, on acceptable approaches that optimize shared interests, including access for all to the benefits of research. There is a need for consent approaches that are guided by realistic aspirations and a balanced view of autonomy within an expanded ethical framework.

Keywords: biological specimen banks; confidentiality; informed consent; policy making; public opinion; trust.

PubMed Disclaimer

References

    1. Albala I, Doyle M, Appelbaum PS. The evolution of consent forms for research: a quarter century of changes. IRB. 2010;32:7–11. - PubMed
    1. Ball MP, Bobe JR, Chou MF, Clegg T, Estep PW, et al. Harvard Personal Genome Project: lessons from participatory public research. Genome Med. 2014;6:10. - PMC - PubMed
    1. Bathe OF, McGuire AL. The ethical use of existing samples for genome research. Genet. Med. 2009;11:712–715. - PubMed
    1. Beardsley E, Jefford M, Mileshkin L. Longer consent forms for clinical trials compromise patient understanding: So why are they lengthening? J. Clin. Oncol. 2007;25:e13–e14. - PubMed
    1. Bergenmar M, Johansson H, Wilking N. Levels of knowledge and perceived understanding among participants in cancer clinical trials—factors related to the informed consent procedure. Clin. Trials. 2011;8:77–84. - PubMed
Cite

NCBI Literature Resources

MeSH PMC Bookshelf Disclaimer

The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Unauthorized use of these marks is strictly prohibited.