“If there was an architect going through the neighborhood and they were drawing plans, I want a copy of the plans of my house…I am not going to build a house, I just want it.”
The above quote is from a focus group participant in a research study conducted by some of my colleagues at the University of Washington. The topic of the focus group was people’s willingness to participate in genetic research and whether they would want to receive their individual results if they were to participate. Here this participant is comparing her genetic results to architectural plans to her house, implying that should would want the information not for any specific use but solely for the sake of self-knowledge: it’s about her, it’s hers, and she wants it. (For my previous research on this and other metaphors, see this post.)
I have previously argued that research participants should be offered access to their personal genetic data. I recognize, however, that there are trade offs to enabling such access. Through an information ethics and policy class I am currently taking, I have been reexamining arguments for personal data access. Below I present one product of this reexamination: exploring the intrinsic and instrumental value (or perhaps lack thereof) of having one’s personal genetic data.
Intrinsic value is worth in a being or object that originates merely from its existence. It is valued as an “end-in-itself” or, more colloquially, “just ‘cause.” The architect plan quote illustrates intrinsic value of genetic information. This woman doesn’t intend to use the information to do anything in particular: she’s not going to “build a house.” However, she feels some ownership and interest in the data as an end-in-itself. Information about our genetic make-up can have a special status. It’s familial, it’s personal, it’s perhaps integral to our very being. Those intrinsic aspects alone might draw us to want our genetic data.
Instrumental value flows from the usefulness of a being or object to achieve some outcome, as a means to an end. There are several ways personal genetic data can be instrumentally valuable to an individual. The routes to potential utility most prominent in my mind are online third-party interpretation tools, the subject of my research. These tools are heterogeneous in their creators, scope, and applications. People trying to learn about their genealogy or relatives have a pretty straight shot to utility via personal genetic data access plus third-party tool analysis. People who want concretely useful information about their health and wellness may be a little more hard-pressed to find it — in some cases because of the nature and evidence base of these tools, and in other cases just because we don’t yet know enough about the genome to make robust predictions.
Notably, some third-party tools are crowd-sourcing genomes for research, an aspect that supports the instrumental value of personal genetic data access a bit more strongly than the individually-focused efforts. But for these tools, the instrumental value arguably exists at the aggregate level, not in individual genomes.
Much of the broader discussions about what genetic information should be returned to people across different contexts invoke the general idea of utility. If there were ever a word to invoke instrumental value, this is it. Some thresholds for returning genetic information to people (e.g., patients or research participants) rest on the idea of clinical utility: genetic information that is useful in deciding the course of clinical care. Others have argued for considering non-clinical, personal utility: things like being able to make personal, non-medical choices based on genetic information (e.g., family planning, career choices, insurance coverage, etc.)
One aspect of personal utility can be the “value of knowing,” and here I wonder if we’re actually circling back to a concept of intrinsic value. Some people value having a genetic “answer” to their condition (in the case of a disease-causing genetic variant), even if there is nothing they can really do about it. Is this valuing the information as an end-in-itself, for intrinsic worth? Perhaps it’s also partly instrumental value, because the knowledge brings about peace of mind, some end to a diagnostic odyssey, perhaps.
Examining intrinsic versus instrumental values of objects and acts has implications for adopting different systems of moral reasoning. For example, utilitarian moral philosophies consider the instrumental value of acts – i.e., the rightness or wrongness of an act is based on the consequences. In contrast, deontological moral philosophies claim the intrinsic nature of an act influences its moral value.
How we act with respect to personal genetic information can be based on utilitarian or deontological ways of thinking. Utilitarianism would say that if having genetic data is useful to people, we should let them have it; if it’s not useful, we shouldn’t (or at least are not morally obligated to give it to them). In contrast, a deontological approach would examine the intrinsic rights of people to have information about themselves, and/or possibly the duty of researchers (to return to my Nature commentary) towards their participants. This duty may or may not encompass returning personal data to participants — I think that’s up for debate. It might be a good idea generally, but is it morally required of researchers to offer participants their data?
Implications for policy
Philosophizing about moral arguments is well and good, but at the end of the day policies are the real carrots and sticks. When it comes to personal genetic data access, I don’t think intrinsic value arguments are going to do enough. Instrumental value arguments will help decision-making, but it’s not clear-cut given the state of the science and the heterogeneity of third-party tools. Empirical evidence is needed to evaluate the claims of instrumental value, and here I’m excited to have my dissertation research play a role.