Fair research and free riders: Do patients have an ethical obligation to provide health data for research?

Angela Ballantyne1,

1 Department of Primary Health Care and General Practice, University of Otago, Wellington New Zealand, angela.ballantyne@otago.ac.nz

Medical knowledge is a ‘public good’ because, according to accepted economic theory, it is “non-rivalrous” and “non-excludable”[1] – one individual can consume medical knowledge without reducing its availability to another individual; and individuals cannot be excluded from the benefits of medical knowledge.  Other public goods include national security, public spaces, and clean air.  Medical research is an essential mechanism for improving medical knowledge. Medical research requires human participants, as well as data and biological samples.[2] I argue that, within certain constraints, we all have an obligation to participate in medical research and that to fail to do so makes us free riders on the efforts of others – we enjoy the benefits of medical knowledge without contributing our fair share. Making our medical records and clinical samples available for research is a low risk mechanism for fulfilling the obligation to participate in the generation of medical knowledge.

H.L.A Hart’s famously proposed the ‘obligation to participate’- “If others are cooperating for mutual benefit and I benefit from their cooperation, then I have an obligation to do my share”.[3]  I draw on the philosophical work of Rawls[4], Arneson[5], Nozick[6]  and Jonas[7] to explore arguments in favour and in critique of this obligation.

My account has implications for the governance and management of big-data initiatives in health care[8], learning health systems[9],[10] and biobanks. The current majority view is that consent, in some form (specific, broad[11], meta[12] or dynamic[13]), is necessary or at least preferable, prior to providing access to patient data and tissue for research. I argue that consent may not be necessary if there is an obligation for patients to allow their clinical data and samples to be used in secondary use research[14].


[1] Samuelson P A. (1954) The Theory of Public Expenditure,  Review of Economics and Statistics 36: 386–389.

[2] Schaefer GO, Emanuel EJ, Wertheimer A. (2009) The obligation to participate in biomedical research. JAMA.302(1):67-72.

[3] Hart H.L.A. (1955) Are there any antural rights? Philosophpicla Review 64:175-191. P185.

[4] Rawls J (1971). A Theory of Justice. Oxford: Oxford University Press.

[5] Arneson RJ. (1982). The principle of fairness and free-rider problems. Ethics 92(4):616-633.

[6] Nozick R (1974). Anarchy, State and Utopia. New York, New York: Basic Books Inc.

[7] Jonas, H. 1969. Philosophical reflections on experimenting with human subjects. Daedalus 98(2): 219–247.

[8] The Nuffield Council on Bioethics. (2015) The collection, linking and use of data in biomedical research and health care: ethical issues. London, UK: The Nuffield Council on Bioethics.

[9] Johnson K, Grossmann C, Anau J, Greene S, Kimbel K, Larson E, Newton K. (2015) Integrating Research into Health Care Systems: Executives’ Views. Discussion paper. Washington, DC: Institute of Medicine. http://www.iom.edu/integratingresearch   

[10] Faden R, Beauchamp TL, Kass NE. (2011) Learning health care systems and justice. Hastings Cent Rep. 41(4):3.

[11] Steinsbekk KS, Kåre Myskja B, Solberg B. (2013) Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem? Eur J Hum Genet.21(9):897-902.

[12] Ploug T, Holm S. (2015) Meta consent: a flexible and autonomous way of obtaining informed consent for secondary research. BMJ 350:h2146.

[13] Kaye J, Whitley EA, Lund D et al. (2015). Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet. 23(2):141-6.

[14] Secondary use research refers to the use in research of data contained in records collected for a purpose other than the research itself.


Biography

Dr. Angela Ballantyne is a Senior Lecturer in the Bioethics Department at the University of Otago and is President of the International Association of Bioethics. She received her PhD from from Monash University and since then has worked around the world most notably as a visiting scholar at Yale University and for the World Health Organisation.

 

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The Australasian Association of Bioethics and Health Law (AABHL) was formed in 2009.

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