Collectivizing Rescue Obligations in Bioethics

Abstract

Bioethicists invoke a duty to rescue in a wide range of cases. Indeed, arguably, there exists an entire medical paradigm whereby vast numbers of medical encounters are treated as rescue cases. The intuitive power of the rescue paradigm is considerable, but much of this power stems from the problematic way that rescue cases are conceptualized—namely, as random, unanticipated, unavoidable, interpersonal events for which context is irrelevant and beneficence is the paramount value. In this article, I critique the basic assumptions of the rescue paradigm, reframe the ethical landscape in which rescue obligations are understood, and defend the necessity and value of a wider social and institutional view. Along the way, I move back and forth between ethical theory and a concrete case where the duty to rescue has been problematically applied: the purported duty to regularly return incidental findings and individual research results in genomic and genetic research.

Keywords:

• genetic research
• moral theory
• research ethics

FUNDING

Research on this article was supported by funding from the National Human Genome Research Institute (R21HG006613). The content is solely the responsibility of the author and does not necessarily represent the official views of the National Human Genome Research Institute or the National Institutes of Health. I am grateful to Kyle Brothers, Brian Carter, Moti Gorin, John Lantos, and Leslie Ann McNolty for helpful feedback on earlier versions of this article.

Notes

1 . Some accounts of rescue obligations propose that more or fewer conditions establish a duty to rescue. For example, Beauchamp and Childress propose five conditions that are necessary and jointly sufficient to establish a beneficence-based obligation to rescue (Beauchamp and Childress 2009, 202). On the other hand, Scanlon's trimmer Rescue Principle holds only that “if you are presented with a situation in which you can prevent something very bad from happening, or alleviate someone's dire plight, by making only a slight (or even moderate) sacrifice, then it would be wrong not to do so” (Scanlon 1998, 224). The three conditions I propose include each of those proposed by Beauchamp and Childress (as well as Scanlon), but reformulate them for the sake of economy and ease of analysis. Regardless of whether one prefers a longer or shorter list, though, the important point about Beauchamp and Childress's list of five conditions and Scanlon's Rescue Principle is that they both assume that rescue obligations properly can be understood and appreciated without reference to social context or background conditions.

2 . For one thing, the value of disclosing individual research findings is essentially zero unless people act on that information or respond to it in a way that has value, which we know is not always the case (cf. Clayton 2012). Additionally, there are legitimate worries that disclosing incidental findings and individual research results has the potential for creating both harms (e.g., confusion, anxiety, and unnecessary tests and procedures) and trade-offs (e.g., diverting scarce social resources from other socially beneficial ends), which diminish the overall net value of the practice (cf. Bredenoord et al. 2011; Wolf et al. 2012).

3 . Thus, the kinds of questions that are obscured when beneficence dominates, such as those questions I mentioned earlier, are immediately brought to the fore when focusing on values like justice and social utility.

4 . Two additional “social” values that might be invoked in this context are collective responsibility and solidarity (though it is not entirely clear how much of what these values emphasize would go uncaptured by a suitably rich theory of justice and social utility); cf. Forsberg, Hansson, and Eriksson (2009).

5 . It is worth adding to these four primary considerations a further difference that separates “rescue” in the genomic research context from the paradigm cases of easy rescue: namely, that rescue might not always be desired (or desirable) in genomic research the way it is in cases like the drowning child. Consider, for example, a list guiding the return of individual research findings such as the one proposed by the American College of Medical Genetics (which recommends that clinical sequencing laboratories should, in addition to investigating the regions of the genome relevant to the clinical indication, routinely test and report pathogenic mutations in 57 additional genes). Many people undoubtedly would prefer to receive this information, but a substantial number would not. This would seem to be importantly disanalagous to a paradigm case like the drowning child, where we can safely presume that not many drowning children would prefer to go unrescued.

6 . See Smith (1990, 25). Smith emphasizes that because modern societies “have socialized the burden of aiding victims” to such a great extent, it follows that “the duty to aid very often amounts to no more than a duty to initiate [these] social mechanisms.”