Another Voice
Beyond Harms and Benefits: Rethinking Duties to Disclose Misattributed Parentage
by jeremy r. garrett
I
n this issue of the Report, Amulya Mandava, Joseph Millum, and Benjamin E. Berkman revisit an old conundrum—whether to disclose incidental findings of misattributed parentage—in light of new developments in genomic sequencing that will make that conundrum both more complex and more common.1 While the authors’ defense of nondisclosure as the appropriate default action in genomic research aligns with prior thinking and practice, their exploration of philosophical foundations is refreshingly rigorous and developed. The final product of their analysis—an applied taxonomy of the types of harms and benefits that can result from disclosure of misattributed parentage—is an important contribution to the literature on this subject and worthy of serious consideration by genomic researchers and bioethicists alike. Despite these virtues, I am struck by the authors’ deference to the traditional assumption that disclosure ethics can be adequately understood and appreciated within a purely consequentialist framework. By making harms and benefits central to their analysis and recommendations, the authors imply that beneficence and nonmaleficence are the only ethical principles relevant to disclosure decisions. This opens their argument to an interesting rebuttal—namely, that when decisions relate fundamentally to people’s sense of self and personal identity, a deontological approach that gives greater place to nonconsequentialist values like justice and autonomy must also factor in. It is worth briefly considering two separate ways that deontological considerations might inform an ethical assessment of disclosure decisions: first, as a side constraint on consequentialist reasoning, and, second, as a wholesale replacement (or reprioritization) of such reasoning. First, then, consider how deontological constraints— specifically, the authority of informed consent—can limit and transform the very concepts of harms and benefits that are central to the authors’ argument. The authors premise their particular defense on the familiar assumption that “moral agents have a stringent duty of nonmaleficence to avoid harming innocent others without their consent” but “much more limited duties to provide Jeremy R. Garrett, “Beyond Harms and Benefits: Rethinking Duties to Disclose Misattributed Parentage,” Hastings Center Report 45, no. 4 (2015): 37-38. DOI: 10.1002/hast.472
July-August 2015
benefits” (p. 30). From this premise regarding the asymmetrical status of harms and benefits, they derive the conclusion that it is “normally impermissible” for researchers to disclose misattributed parentage “if disclosure is likely to harm a participant or family member” or if “there is no clear evidence of either harm or benefit” (p. 30). Hence, disclosure is never obligatory (for all practical purposes), and it will only even be permissible in the rare cases where “there is very clear evidence that [disclosure] will be helpful and not harmful” (p. 36). Both parts of the premise of this argument contain key qualifying terms and conditions that need to be carefully unpacked. The first part—the “stringent” duty of nonmaleficence—forbids inflicting harm upon innocent others “without their consent.” But no credible pro-disclosure advocates argue that researchers should disclose misattributed parentage to participants without first informing the participants of this possibility and obtaining their consent. Instead, they argue that researchers should offer to disclose such findings in at least some cases and then respect the consensual decision of each participant. This act of consent transforms the situation such that some outcomes that might otherwise have counted as blameworthy harms no longer do (just as informed consent for a surgical procedure immunizes a surgeon from blame for certain negative complications or other outcomes that might arise). Thus, we may not be able to assume that negative outcomes resulting from consensual disclosure even qualify as instances of “harming the patient” in the first place, and we certainly cannot assume that the duty of nonmaleficence categorically forbids offering participants the choice to risk such outcomes (as they are permitted to do when consenting to receive any number of risk-carrying medical procedures or disclosures). To be fair, the authors consider whether researchers have an obligation to at least offer participants the choice to receive results of misattributed parentage. However, they quickly dismiss this possibility on the basis of three arguments. Two of the arguments they make—first, that patients’ preferences about disclosure can be unreliable or can lack the consensus of family members and, second, that disclosure can be resource intensive—would apply to disclosure of many kinds of results. Thus, either no (or perhaps very few) results of any kind should be offered H AS TI N GS C EN TE R RE P O RT
37
for disclosure or these concerns are not a sufficient basis for inferring the impermissibility of offering to disclose misattributed parentage. The remaining argument against offering participants a choice may or may not apply too broadly as well, but it is problematic in another important way that is worth considering more carefully. The authors emphasize that “[r]esearchers do not have the obligation to ask participants about every type of finding they might be interested in receiving” (p. 35). This certainly seems true, but it raises the fundamental question being considered here: do researchers have an obligation to inquire about this particular type of finding given the importance that many people might place on it? That researchers have no obligation to solicit participant preferences about every type of potential incidental finding does not mean that they have no obligation to solicit preferences about any type of potential incidental finding. The authors might appear to have identified a principled basis for ruling out such inquiry in the case of misattributed parentage in the very next sentence, where they assert that “only . . . in those scenarios in which a researcher would independently have some obligation to disclose information could she have a prior duty to offer the participants the option of whether to receive it” (p. 35, emphasis added). Yet this highlights the ethical risks of viewing this issue through an exclusively consequentialist lens: it focuses on an extremely narrow scope of obligations “to provide benefits” and may obscure other independent sources of duties for researchers. Even if it’s true that researchers have limited duties of beneficence (and the scope and nature of beneficence or utility is obviously a matter of serious debate among moral philosophers), this claim applies to the decision to disclose misattributed parentage only if we assume that the point of such disclosure is to “benefit” (further the welfare interests of ) the participant. What if we consider other possible goals of such disclosures to be fundamental and consequences to be
38 HASTI N G S C E N T E R R E P ORT
secondary? In some cases, disclosure may be better conceived of along the lines of acts like returning something to its rightful owner (even if that owner might experience some likely negative outcome of having his or her property returned), protecting what many participants might consider to be a birthright (namely, knowing who one’s biological parents are when such information is available and known by others), or rectifying a past injustice (for example, uncovering cases of botched in vitro fertilization or sperm donation). And, in such cases, the scope of a researcher’s obligation may not be as narrow as it would be if the point of disclosure was only to fulfill one’s imperfect and discretionary duty of beneficence. My point here is not to argue for any of these alternative conceptualizations but, rather, to point out that the ethical dimensions of disclosure are not sufficiently exhausted by inventorying the ways in which it promotes or sets back welfare interests. This latter point pushes us to consider whether we need a fundamentally different approach to questions like those raised by disclosure of misattributed parentage. It may be that decisions relating to an individual’s sense of self and personal identity cannot be treated identically to decisions relating to clinically relevant findings. Or it may be that they can be treated identically but that in both cases one needs the input of the primary stakeholder (and hence his or her informed consent) in order to adequately understand all the ethical dimensions of the decision and what it will mean for that stakeholder. Mandava and colleagues certainly provide us with useful tools for analyzing and evaluating an important range of these dimensions. But we likely need more than cost-benefit analysis in our ethical toolbox if we are to appropriately characterize what is at stake in correcting someone’s false beliefs about their biological and personal identity. 1. A. Mandava, J. Millum, and B. E. Berkman, “When Should Genome Researchers Disclose Misattributed Parentage?,” Hastings Center Report 45, no. 4 (2015): 28-36.
July-August 2015
Beyond Harms and Benefits: Rethinking Duties to Disclose Misattributed Parentage
by jeremy r. garrett
I
n this issue of the Report, Amulya Mandava, Joseph Millum, and Benjamin E. Berkman revisit an old conundrum—whether to disclose incidental findings of misattributed parentage—in light of new developments in genomic sequencing that will make that conundrum both more complex and more common.1 While the authors’ defense of nondisclosure as the appropriate default action in genomic research aligns with prior thinking and practice, their exploration of philosophical foundations is refreshingly rigorous and developed. The final product of their analysis—an applied taxonomy of the types of harms and benefits that can result from disclosure of misattributed parentage—is an important contribution to the literature on this subject and worthy of serious consideration by genomic researchers and bioethicists alike. Despite these virtues, I am struck by the authors’ deference to the traditional assumption that disclosure ethics can be adequately understood and appreciated within a purely consequentialist framework. By making harms and benefits central to their analysis and recommendations, the authors imply that beneficence and nonmaleficence are the only ethical principles relevant to disclosure decisions. This opens their argument to an interesting rebuttal—namely, that when decisions relate fundamentally to people’s sense of self and personal identity, a deontological approach that gives greater place to nonconsequentialist values like justice and autonomy must also factor in. It is worth briefly considering two separate ways that deontological considerations might inform an ethical assessment of disclosure decisions: first, as a side constraint on consequentialist reasoning, and, second, as a wholesale replacement (or reprioritization) of such reasoning. First, then, consider how deontological constraints— specifically, the authority of informed consent—can limit and transform the very concepts of harms and benefits that are central to the authors’ argument. The authors premise their particular defense on the familiar assumption that “moral agents have a stringent duty of nonmaleficence to avoid harming innocent others without their consent” but “much more limited duties to provide Jeremy R. Garrett, “Beyond Harms and Benefits: Rethinking Duties to Disclose Misattributed Parentage,” Hastings Center Report 45, no. 4 (2015): 37-38. DOI: 10.1002/hast.472
July-August 2015
benefits” (p. 30). From this premise regarding the asymmetrical status of harms and benefits, they derive the conclusion that it is “normally impermissible” for researchers to disclose misattributed parentage “if disclosure is likely to harm a participant or family member” or if “there is no clear evidence of either harm or benefit” (p. 30). Hence, disclosure is never obligatory (for all practical purposes), and it will only even be permissible in the rare cases where “there is very clear evidence that [disclosure] will be helpful and not harmful” (p. 36). Both parts of the premise of this argument contain key qualifying terms and conditions that need to be carefully unpacked. The first part—the “stringent” duty of nonmaleficence—forbids inflicting harm upon innocent others “without their consent.” But no credible pro-disclosure advocates argue that researchers should disclose misattributed parentage to participants without first informing the participants of this possibility and obtaining their consent. Instead, they argue that researchers should offer to disclose such findings in at least some cases and then respect the consensual decision of each participant. This act of consent transforms the situation such that some outcomes that might otherwise have counted as blameworthy harms no longer do (just as informed consent for a surgical procedure immunizes a surgeon from blame for certain negative complications or other outcomes that might arise). Thus, we may not be able to assume that negative outcomes resulting from consensual disclosure even qualify as instances of “harming the patient” in the first place, and we certainly cannot assume that the duty of nonmaleficence categorically forbids offering participants the choice to risk such outcomes (as they are permitted to do when consenting to receive any number of risk-carrying medical procedures or disclosures). To be fair, the authors consider whether researchers have an obligation to at least offer participants the choice to receive results of misattributed parentage. However, they quickly dismiss this possibility on the basis of three arguments. Two of the arguments they make—first, that patients’ preferences about disclosure can be unreliable or can lack the consensus of family members and, second, that disclosure can be resource intensive—would apply to disclosure of many kinds of results. Thus, either no (or perhaps very few) results of any kind should be offered H AS TI N GS C EN TE R RE P O RT
37
for disclosure or these concerns are not a sufficient basis for inferring the impermissibility of offering to disclose misattributed parentage. The remaining argument against offering participants a choice may or may not apply too broadly as well, but it is problematic in another important way that is worth considering more carefully. The authors emphasize that “[r]esearchers do not have the obligation to ask participants about every type of finding they might be interested in receiving” (p. 35). This certainly seems true, but it raises the fundamental question being considered here: do researchers have an obligation to inquire about this particular type of finding given the importance that many people might place on it? That researchers have no obligation to solicit participant preferences about every type of potential incidental finding does not mean that they have no obligation to solicit preferences about any type of potential incidental finding. The authors might appear to have identified a principled basis for ruling out such inquiry in the case of misattributed parentage in the very next sentence, where they assert that “only . . . in those scenarios in which a researcher would independently have some obligation to disclose information could she have a prior duty to offer the participants the option of whether to receive it” (p. 35, emphasis added). Yet this highlights the ethical risks of viewing this issue through an exclusively consequentialist lens: it focuses on an extremely narrow scope of obligations “to provide benefits” and may obscure other independent sources of duties for researchers. Even if it’s true that researchers have limited duties of beneficence (and the scope and nature of beneficence or utility is obviously a matter of serious debate among moral philosophers), this claim applies to the decision to disclose misattributed parentage only if we assume that the point of such disclosure is to “benefit” (further the welfare interests of ) the participant. What if we consider other possible goals of such disclosures to be fundamental and consequences to be
38 HASTI N G S C E N T E R R E P ORT
secondary? In some cases, disclosure may be better conceived of along the lines of acts like returning something to its rightful owner (even if that owner might experience some likely negative outcome of having his or her property returned), protecting what many participants might consider to be a birthright (namely, knowing who one’s biological parents are when such information is available and known by others), or rectifying a past injustice (for example, uncovering cases of botched in vitro fertilization or sperm donation). And, in such cases, the scope of a researcher’s obligation may not be as narrow as it would be if the point of disclosure was only to fulfill one’s imperfect and discretionary duty of beneficence. My point here is not to argue for any of these alternative conceptualizations but, rather, to point out that the ethical dimensions of disclosure are not sufficiently exhausted by inventorying the ways in which it promotes or sets back welfare interests. This latter point pushes us to consider whether we need a fundamentally different approach to questions like those raised by disclosure of misattributed parentage. It may be that decisions relating to an individual’s sense of self and personal identity cannot be treated identically to decisions relating to clinically relevant findings. Or it may be that they can be treated identically but that in both cases one needs the input of the primary stakeholder (and hence his or her informed consent) in order to adequately understand all the ethical dimensions of the decision and what it will mean for that stakeholder. Mandava and colleagues certainly provide us with useful tools for analyzing and evaluating an important range of these dimensions. But we likely need more than cost-benefit analysis in our ethical toolbox if we are to appropriately characterize what is at stake in correcting someone’s false beliefs about their biological and personal identity. 1. A. Mandava, J. Millum, and B. E. Berkman, “When Should Genome Researchers Disclose Misattributed Parentage?,” Hastings Center Report 45, no. 4 (2015): 28-36.
July-August 2015
