Academic journal article Health Law Journal

There Will Be Sharing: Population Biobanks, the Duty to Inform and the Limitations of the Individualistic Conception of Autonomy

Academic journal article Health Law Journal

There Will Be Sharing: Population Biobanks, the Duty to Inform and the Limitations of the Individualistic Conception of Autonomy

Article excerpt

"'Data! Data! Data!' he cried impatiently. 'I can't make bricks without clay.'"

--Sherlock Holmes (in Arthur Conan Doyle, The Adventure of the Copper Beeches)


The principle of autonomy has been the cornerstone of the physician's duty to inform ever since paternalistic practices receded in the second half of the 20th century. (1) In the past, physicians were authorized to withhold

relevant information in an effort to protect their patients from harm. (2) With the advent of comparative judgment, however, physicians were encouraged to consider whether "withholding [...] information [would] result in less harm on balance than divulging it". (3) Eventually, disclosure became a central feature of the principle of autonomy. Practically speaking, the principle of autonomy in the medical field translated to the right (of a patient) to make an informed decision free from unjustified interference by others. (4) According to one conception, to respect autonomy is:

"[...] to give weight to autonomous persons' considered opinions and choices while refraining from obstructing their actions unless they are clearly detrimental to others. To show lack of respect for an autonomous agent is to repudiate that person's considered judgments, to deny an individual the freedom to act on those considered judgments, or to withhold information necessary to make a considered judgment, when there are no compelling reasons to do so". (5)

Based on this principle, the less an individual is expected to benefit therapeutically from a procedure, the higher the duty to inform becomes. This is true for cosmetic surgery, organ donation and non-therapeutic research. (6)

In research, Canadian courts have maintained that participants are entitled to a "full and frank disclosure" (7) and that researchers' duties in that regard are as great, if not greater, than the duties owed by physicians in the clinical setting. (8)

The increasingly longitudinal and international nature of research is challenging the feasibility of maintaining such an expansive duty to inform. (9) As researchers rely less on active human participation, and more on cutting-edge technologies that generate vast amounts of data, (10) the parameters of the traditional duty to inform look increasingly porous. This is particularly true for population biobanks, which aim to study data and samples collected on a large population scale and over a long period of time. (11) In these large-scale projects, participants are informed that their data and samples will be used to establish biobanks as resources for future research in health and genomics. (12) It is very difficult to provide full disclosure in the context of a biorepository for future, unspecified research by as-yet unnamed researchers.

Much ink has been spilled in the last decade on the type of consent required for these population projects. Indeed, many have debated whether or not broad consent--a model increasingly used by population studies satisfies the legal requirements of informed consent. (13) Others have focused on operational matters, examining the governance and practicability of both specific and broad consent approaches to population biobanks. (14) In contrast, this article delves deeper into the reasons why many population biobanks have resorted to broad consent and why the current legal duty to inform requirements might be inimical to such projects (in particular) and research (in general).

As will be detailed later in this text, population biobanks are limited in terms of what information they can provide to research participants during the consent process. On the one hand, they are increasingly encouraged to share their findings by providing access to their repositories, but on the other hand, they are unable to provide participants with full disclosure about the future use of their data and samples at the time of recruitment. …

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