genomics & society

CGS Seminar: “Gifts of the Body: Expectations of Cancer Patients Involved in a Whole Genome Sequencing (WGS) Study

Posted by Dragana Lassiter on November 29, 2011

On Tuesday, November 15th, 2011, CGS trainees, Rachel Haase and Marsha Michie with CGS investigator, Debra Skinner, presented data from the whole genome sequencing (WGS) experience of cancer patients at UNC under the direction of CGS investigators, Jim Evans and Jonathan Berg, and Kristy Lee, the certified genetic counselor on the team.  The seminar was titled “Gifts of the Body: Expectations of Cancer Patients Involved in a Whole Genome Sequencing (WGS) Study.”  The analysis of gift-giving reveals complex interrelationships between the two seemingly contradictory motives of self-interest and altruism and has important implications for recruiting individuals into these studies. 

Why Do Participants Enroll?
Debra, Marsha and Rachel interviewed 23 patients about their expectations, motivations, and understanding of risks and benefits of participating in a research project offering WGS.  In her presentation, Marsha discussed how research participants see their role in research as responding to a need to “do something.” The interview excerpts reveal the extent to which patients see themselves as being proactive and part of the research team. This sentiment, Marsha argued, is expressed through a ”we are all in this together” and “doing something” discourse.

Research Samples as  Gifts
Rachel’s analysis drew on anthropological studies of the gift, reviewing the work of Titmuss and Mauss. Participants spoke of donating samples as giving both in terms of giving to living family member, benefiting future generations, and giving knowledge. Rachel emphasized the relational understanding of the gift, challenging the notion of a free gift (via Mauss) and the usefulness of altruism as a category of analysis when it comes to sample in research.Together, these two discussions point to the difficulties of conceptualizing the role of research participants in whole genome studies and genetic research more broadly.

Patients’ Expectations of Research Benefits
On the one hand the “we are all in this together” research participant approach that has characterized patient activism in the United States vexes the positing of the participant-researcher relationship in terms of gift giving. As raised in the discussion following the presentation, the enthusiasm for participating in research by people who state that they “just saw positive things about the study” and had a “bring it on” attitude could be unsettling to how ethicists conceive of research participation as altruistic and with no undue inducement (Hayden 2007). And while there is no commercial value promised or expected from this research, it raises questions in terms of participants’ motivations.

Researcher- Participant Relationships
Family activism around PXE (pseudoxanthoma elasticum) and Canavan disease have often been used by scholars to call for an elaboration of a new philosophy on and a reconfiguration of research relationship. Contemporary tissue economies are more complex and fractured than blood donation as described in prevalent understanding of gift economies (Waldby and Mitchell 2006). They raise questions about commercialization, return of results and intellectual property that have marked the post human genome era. Like Rachel’s claim that there is no line between altruism and self-interest, many scholars have pointed out that there is no clear line between a gift and a commodity (Frow 1997; Waldby and Mitchell 2006).

Intended Beneficiaries of the Gift
On the other hand, Debra, Marsha and Rachel’s work points to another space in which gifting as an analytical framework might still be useful. In recent years the principle of autonomy has come under attack by scholars who argue that because participants in genetic research are often collectives (such as families) principles based on solidarity and reciprocity are more suitable (Arribas-Ayllon 2010). While some see this collectivization of research subjects as incompatible with gift economy, it is interesting that the interviewees spoke of their participation as gifts to other family members rather than to an imagined unspecified public. This might points to the way giving holds some salience even when subjects are collectivized.

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5 Responses to “CGS Seminar: “Gifts of the Body: Expectations of Cancer Patients Involved in a Whole Genome Sequencing (WGS) Study”

  1. Rachel Haase said

    Thanks for the great discussion, Dragana! Having recently revisited Waldby and Mitchell (2006), I am thinking newly about the types of property relations between gift and commodity, in terms of “investments.” Although their example was cord blood banking, I think giving to the research enterprise can be thought of in this way as well – although again, there are always counter-examples, and ways in which the fit is not exact. I think this speaks to the idea that acts hold multiple meanings (even to the same person), and can be retrospectively revalued depending on people’s changing hopes and expectations.
    I think we had some terrific questions raised after the presentation as well. One that has stuck in my mind is the issue of ongoing contact between researcher-clinicians and patient-participants, and how relationships may be transformed after the study, in addition to prior relationships impacting participation. Perhaps this is something we will be able to ask about in interviews down the line with recontacted participants, but even if not, I think it’s a great thing to consider in regards to the many cases where researchers play a dual role as care providers.

    • Myra I. Roche said

      Thanks Rachel for your comments. I think your thoughts about actions having multiple meanings is absolutely correct and I feel that our tools to assess these meanings are so limited. That’s why so many studies seem as though they are making the same conclusions when those might actually be the “low hanging fruit” response that is the most easily captured. Qualitative work helps enrich this but I think many people have not examined this in their own minds and are therefore unable to articulate it during an interview.

  2. Martha K. said

    I was unable to attend this seminar, so thanks for the summary, Dragana. These thoughts may have been covered in the presentation or discussion, but I’ll comment anyway! I am left wondering if we frame the (anthropologically-viewed) gift as alienated from its giver or not. If we understand it as one or the other, can we then see the line between gift and commodity start to arise?

  3. Karey said

    I was able to attend this seminar and I must say I thoroughly enjoyed the presentation. I was able to think about why people join research studies and who exactly do they conceptualize their role as a participant. I was unaware that some participants do feel as if they are part of the team. The thoughts shared from the participants allowed me to review how exactly I present my research to potential participants. Am I giving them false hope that their participation in my research will provide them with more than is actually feasible? As the researcher, am I thoroughly explaining the benefits, if any of participating in the research study? Though the presentation was about the role of the participant and their sample, I was able to examine my role as the researcher in hopes of ensuring all communication is as transparent as possible.

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