Genetic research and the collective good: participants as leaders

By Ilaria Galasso and Susi Geiger.

Medical ethics has long centered around the question of how to balance the public or common good with individual rights. Different approaches to ethics would prioritize different values in the context of medical research participation. Well-established moral principles provide solid arguments both for an obligation to participate in medical research to benefit a patient community even at the expense of the individual research participant, and for an obligation to protect the research participants even at the expense of a patient community. In our recent Journal of Medical Ethics article, we argue that this is a contrast that is not irreconcilable. If research participants and potential beneficiaries are considered as part of the same collective, they can be involved in negotiating and governing what we term the ‘collective good’. The collective good, in our definition, corresponds to the good for a given and identifiable collective, and, crucially, it is defined by the collective itself

We develop our argument around genetic research. While genetic research promises previously unthinkable life-saving or life-changing medical advancements for particular disease groups or demographics, genetic information is particularly sensitive and may cause severe discrimination at different levels, from social stigma, to racism, to exclusion from some insurance plans or even from the job market. Moreover, unlike other kinds of individual data, genetic information also directly affects family members and sometimes even the broader community. We analysed two illustrative recent controversies around genetic data (mis)use related to particular communities: the case of the United Kingdom institute Wellcome Sanger accused of planned unauthorized commercialization of African DNA samples, and the case of the private company Genuity Science planning genetic research on Irish brain tumor samples with no explicit patient consent. We examined the public debates and all the available public documents around these controversies, and we conducted interviews with concerned actors as well as with participant representatives and research leaders concerned with genetic research participant protection and involvement more broadly.

Our interview participants took different perspectives, but overall they were aligned in their conclusions. Three key points emerged: (1) in order to engage with the tension between individual protection and greater benefits, involved actors first of all need to ensure that the potential good arising from genetic research projects is actually made transparent for the collective and equitably shared – an aspect often taken for granted erroneously; (2) many saw the solution for this tension in appropriate (truly informed) informed consent. In alignment with our notion of the collective good as a result of collective framing efforts, our respondents felt that informed consent needs to go beyond the formal approval of individual research subjects and be case-specific and dynamic to provide participants as well as beneficiaries with a full understanding of the research, including the related benefits and risks. (3) Finally, beyond consent, respondents directly concerned with minorities or vulnerable groups argued that the safest way to ensure that a good for the collective actually arises is that representatives of those groups are part of the leadership and governance of the research, co-determining what good can and should be derived from the research.

This “participants as leaders” approach emerged as a central means to frame and govern the collective good, to prevent replication and exacerbation of exploitation and injustice, particularly in cases in which this is a real concern due to historical, socioeconomic or geopolitical reasons. In contexts where such particular collective vulnerabilities are not at stake, meaningful consultation rather than co-governance may be accepted by stakeholders as sufficient for the pursuit of the collective good. On the other hand, as noted in the context of the Irish controversy, research participants and potential beneficiaries always need “allies” situated at the core of a project: someone whose interests are aligned with theirs and not solely aimed at profit-making at their expense. This is indeed the prerequisite to ensure that the good of the collective is a concern at all, preeminent to any negotiation or co-leadership to frame it.

The “participants as leaders” approach that we propose is expected to maximize health benefits and minimize sovereignty violations for the collective in question. But it also makes the problem of inclusiveness all the more pressing and challenging. Minorities and patients in low-income countries or from marginalized or socioeconomically disadvantaged communities are those who most need but may also most struggle to be fully included in the definition and governance of the collective good. More than investments in the research itself, the pursuit of the collective good in genetic research therefore requires investments in capacity and competency building for co-governance within the concerned communities. Such investment is vital, we would argue, to balance an inclusive definition and distribution of the collective good with sovereignty concerns through genetics research conducted by collectives rather than on them.

 

Paper title: Genetic research and the collective good: participants as leader sto reconcile individual and public interests

Authors: Ilaria Galasso 1, 2 and Susi Geiger 1

Affiliations:

1 School of Business, UCD, Dublin, Ireland

2 Institute of History and Ethics in Medicine, Technical University of Munich, Germany.

Competing interests: None declared

Social media accounts of post authors: @ilagalasso; @complexmarkets

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