Response to Open Peer Commentaries: Distinguishing the “Gift” from “Donation” as a Path toward Reciprocity and Relational Ethics

I am thankful to those who commented on “Obligations of the “Gift”: Reciprocity and Responsibility in Precision Medicine.”(Lee 2020) This target article focuses on justice and inequities in precision medicine research as a critical frontier for bioethics work. Building on anthropological framings of the gift, I suggest that receiving biospecimens and data in the context of research participation is inextricable from ongoing social relationships of reciprocity. By distinguishing the “gift” from “donation,” I argue that these acts should not be considered merely in terms of altruism, but are actions that require recognition and return of meaningful and tangible benefits. I appreciate the insights of the commentaries and the opportunity they each provide to clarify and develop my thinking on these important issues.

Recognition and the Spirit of the Gift

The framework of the gift as discussed by anthropologist Marcel Mauss underscores that reciprocity are essential features of human relationships. Reciprocity requires that each partner within a relationship understand, is committed to and be capable of meeting the needs of the other. I use Mauss’ framing of the gift to usher into focus the obligations of reciprocity in research relationships that include recognition, governance, and benefit-sharing. In their commentary, Lamphier et al. (2021) put forward a Derridean view of the gift, arguing that there is no room in the gift framework to consider the “return of benefit”; rather, the authors contend that the gift can only be considered as an unconditional gesture. However, I would suggest that this rendering is consistent with the language of “donation” commonly used in biomedical research.

Instead, the gift framework, builds on Mauss’ recognition that embedded in material gifts is the life force of persons: the spirit of the gift that creates inalienable bonds and mutually dependent ties between givers and receivers. As such, the gift counters western assumptions of a universal conception of the purely disinterested actor and the notions of free and unconstrained gifts. Rather, Mauss suggested that some essence of the donor is transferred with that which is given and must be returned back to the original owner. This conception of the gift contrasts with that of donation; the latter is unfettered by social norms of reciprocity whereas the gift is always infused with the obligation to give back.

Trust-building and Long Term Research Relationships

Several of the commentaries conveyed that trust and trustworthiness in precision medicine research requires ongoing cultivation. Trust-building by the research community will require time, investment and a willingness to engage in meaningful tradeoffs in order to avoid the harm that can accrue from what Shaul et al. (2021) describe as the “unreciprocated gift.”

Recognizing the blurring boundary of clinical care and precision medicine research, Lee and Kraft (2021) raise concerns about the dual role of physician investigators enrolling patients into therapeutic trials and the shifting clinical and research goals that can bear on these longitudinal relationships. As the authors suggest, a focus on values of respect for patients and their families is needed at the institutional level to address ethical questions about the potential risks and benefits of interventions when responsibilities are unclear.

Trust building is taken up by Barton and colleagues (2021 in their discussion of the learning health system and processes for expanding access and communication that would fulfill goals of reciprocity to patients. The learning health system, aimed at seamless integration and circulation of patient information, can also present challenges for transparency and possibilities for intervention. Drawing on our study of the perspectives of underrepresented patients on the learning health system, my colleagues and I have stressed the importance for new models of shared decision making that enable open communication on the values that are most important to patients (Kraft et al. 2018). As pointed out by Barazzetti et al. (2021), implementing consent and governance frameworks that ensure that research and its developments are consistent with participants’ values and goals is imperative.

Barazzetti et al. further emphasize the need for open discussion of the criteria for defining collective benefit from precision medicine research. This bears on the meaning of inclusion and who precision medicine is ultimately for. Gross (2021) raises this important question in discussing concerns about whether a norm of reciprocity can be inclusive of groups who have been excluded. Lensink et al. (2021) remind us that individuals not readily identified or recognized as a group or community can lack recognition, as in the case of patients of rare and ultra-rare diseases. On the question of who is precision medicine research for, Blumling et al. (2021) productively expand the relational stakes from research participants to future patients and the responsibility of researchers to be stewards of these long-term relationships. Recognizing the potential conflicting interests of stakeholders, they rightly suggest that these relationships “balance on a ledge of mutual trust”. However, as these scholars argue, trust cannot be taken for granted and the demands of the gift framework requires attending to the moral obligation of stewardship and the return of meaningful benefit.

Equity and Reciprocity

Instead of continuing to rely on “good intentions”, Desmond (2021) argues for a transition from “assuming trust” towards “demonstrating trust.” Conflicting interests and positions of power create inequities that put into question agreed upon understanding of what constitutes the “common good”. A commitment to long term relationships demands not only engagement but interrogating fundamental assumptions about shared values. This includes a willingness to reorient from maintaining the primacy of “scientific progress” to a vantage point that puts “equity” as the core value.

In putting forward the gift framework, Mauss demands that we pay attention to the symbolism of giving and to the material consequences of how exchanges are manipulated and controlled in the world. Tsosie’s et al. (2021) take up this charge by underscoring the inequitable context in which Indigenous people are asked for their biospecimens and data primarily by non-Indigenous researchers and institutions to conduct genomic research that has not resulted in tangible benefits for their communities. Reciprocity and respect require confronting the history of disempowerment and the limits of the current ethical infrastructure built on western ideals. Indigenous scientists and scholars lead the way in resisting the commodification of Indigenous peoples’ DNA by proposing models of benefit sharing and governance that prioritizes equity (Fox 2020; Hudson et al. 2020; Claw et al. 2018).

By distinguishing the gift from donation and invoking the gift in terms of its sociality and attendant obligations, I seek to recover the imperative to recognize those that are all too often unrecognized, “to see and be seen”, and to make good on the responsibility for reciprocity. This means meeting the needs of the giver, not as conceived by the research enterprise in the form of scientific knowledge, but instead, in terms of relational equity and all that should entail, including transparency, governance, and profit sharing.

Medical anthropologist Arthur Kleinman emphasizes the role of reciprocity for healing and specifically, the fulfillment of obligations defined by moral relationships (Kleinman 1995). Healing of the social body requires a commitment to giving back in a meaningful way; a return that is meaningless to the giver is not reciprocity and can be more destructive to relationships than no return at all. Drawing on their study of the All of Us Research Program’s recruitment at Federally Qualified Health Centers, Neuhaus and Crane (2021) raise concerns over “an unsure promise” of precision medicine research given structural inequities in access to care that disproportionately burden the underrepresented groups now being targeted for enrollment. As these scholars suggest, the gift as an opening for long term relations can not only be shaped by promissory language and imagined futures but by acting on moral obligations of recognizing and addressing current challenges on the ground. A framework that brings into view the long history of inequality and the recognition of how these continue to manifest in biomedical research and clinical care is sorely needed.

Conclusion

As I have argued, a justice forward approach to bioethics requires confronting and rectifying inequities so that the disempowered can be recognized and have standing in research relationships. Rather than singular transactional events, the social relationships that enliven acts of giving and reciprocating create the possibility of a relational ethics that does not begin and end with individual studies, but rather brings into view ongoing, mutual responsibilities. Answering questions of who precision medicine is for and what is owed to those who participate will be determined by the values that prevail. The gift framework must contend with the reality that research can recapitulate inequities that are often elided in invocations of the common good. Making transparent the competing interests of actors and institutions in precision medicine research is a first step towards achieving reciprocity in the gift relationship. To fulfill the obligations of the gift, equity must be prioritized as the leading indicator of scientific progress.