Abstract
A sign on a highway features a crash test dummy driving and encourages drivers to slow down and drive safely by reminding them: he doesn’t have anyone waiting for him at home—you do. The appeal to the stake family members have in each other’s well-being and to the care and concern family members have toward each other is unmistakable and powerful. It should be taken more seriously in the clinical and biomedical research settings. Particularly when individuals are making decisions that will expose them to risks primarily or exclusively for the benefit of others, the decision making process should, when possible, include the family. “Family” refers to people connected by blood or marriage (and perhaps in some settings by alternative bonds) and who constitute what Lainie Friedman Ross describes as an “intimate family.” Such a family is one in which “there is significant interdependence of the members and a commitment to the well-being of each other and of the group”. Different cultural traditions and circumstances will yield different understandings of how “far” the family extends and who counts as being part of an intimate family. None of these details are important here. This is not a sociological analysis of the family. This essay offers a philosophical argument for explicitly and proactively engaging families in certain types of decisions made in the clinical and biomedical research settings and could accommodate different understandings of the family. For individuals who exist outside of an intimate family, the arguments here are not relevant. However, clinicians and researchers should not assume that most patients and potential research participants exist outside of an intimate family whose participation in health-related decisions is unnecessary or even inappropriate. Family engagement is justified and important for two main reasons: family members may have a stake in each other’s well-being and may also be concerned with advancing and protecting each other’s interest because they care about each other’s well-being. These two considerations give us important reasons to take families seriously in the health care setting. These considerations are especially important when individuals are asked to assume health risks primarily or exclusively for the benefit of others.
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Notes
- 1.
Such a billboard was visible along highways near Doha, Qatar during a February 2012 visit.
- 2.
Ross is addressing ethical issues in medical decision-making regarding children, and thus speaks explicitly of adults and non-emancipated minors for whom those adults are responsible. I use the term more broadly.
- 3.
The concept of duty to one’s family, particularly to one’s parents, might provide a different justification for family engagement in contexts in which such a duty is recognized. See, for example, Chap. 9.
- 4.
In some cases, research risks must be justified in part by the potential for direct benefit to participants or other special considerations. See, for example, the regulations governing research on children and prisoners (Code of Federal Regulations, title 45, sec. 46, subpart D, subpart C).
- 5.
There are additional regulations governing research risks in research on certain populations such as children and pregnant women.
- 6.
To engage family members in a decision does not mean that they are granted authority over the individual or that they may force the individual to make a particular decision. The extent to which such authority is recognized will depend on a number of factors and will vary among cultures. The relevant point here is that they should be included in a discussion.
- 7.
For a summary of state laws regarding informed consent, see King and Moulton (2006) and the Appendix of the decision in Ketchup v. Howard, 247 Ga. App. 54 (Ga. Ct. App. 2000).
- 8.
“Informed consent” is in scare quotes because in at least some cases patients are not in a position at the time they are asked to give consent to fully understand and appreciate information or ask questions.
- 9.
Recall that one of the reasons informed consent ordinarily is required is to protect individual well-being (see Berg et al. 2001, p. 11).
- 10.
In special circumstances, the family might end up better off over all or other individuals in the family might end up better off. This is addressed further below.
- 11.
This claim is related to concerns about the therapeutic misconception. Therapeutic misconception refers to circumstances in which “clinical research subjects fail to recognize the ways in which research participation may involve the sacrifice of some degree of personal care” (Appelbaum et al. 2004, p. 1).
- 12.
There is evidence that a small percentage of patients who participate in phase one oncology trials do experience some response to the study drug (Horstmann et al. 2005). This does not mean that they are cured as a result of their participation or even necessarily that they live longer or have a better quality of life. A response could be a reduction in tumor size.
- 13.
For an analysis of the role of the family in research decision making in China, see Deng (2015).
- 14.
Paired exchanges involve two donor-recipient pairs, i.e., pairs in which one person is willing to donate a kidney and one person needs a kidney. However, they are not suitable donors for their intended recipients. Instead, the donor from pair 1 and the recipient from pair 2 are compatible and the donor from pair 2 and the recipient from pair 1 are compatible. Each donor gives a kidney to the recipient from the other pair. Donation chains involve more people in exchanges that are not simply one-to-one as in the paired exchange. In a chain, one donor may give to a recipient who has a willing but incompatible donor. That willing donor then donates to someone else, who also may have a willing but incompatible donor. That donor then agrees to donate to another recipient an do so. This can be repeated serially to create chains of varying lengths.
- 15.
Some have argued that the insistence on individual informed consent grounded in the notion of an autonomous individual in authority over himself fails to reflect the reality of dependence and relationships within families, particularly in the face of illness and impending death. See, for further discussion, Bishop (2015), Cherry (2015), Choi (2015) and Nash (2015).
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Iltis, A.S. (2015). Families and Medical Decisions to Assume Risks for the Benefit of Others. In: Fan, R. (eds) Family-Oriented Informed Consent. Philosophy and Medicine(), vol 121. Springer, Cham. https://doi.org/10.1007/978-3-319-12120-8_11
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