Eline Bunnik's comment(1) concludes with the observation that not all existing direct-to-consumer genetic tests enhance the autonomy of their consumers, not if autonomy is understood in the Razian sense employed in my article.(2) This is a demanding sense of autonomy, one that requires the presence of an adequate range of valuable options from which to choose. Bunnik's conclusion is difficult to disagree with, but that's because it is sheer commonsense. No existing services of any kind are guaranteed to enhance their consumers' autonomy. It all depends on various factors such as the nature and quality of the service, the conditions under which it is delivered, and the use made of it by consumers. What is surprising is that Bunnik reads me as disagreeing with this banal truth.

Contrary to Bunnik's interpretation, in the article I explicitly stated that '[my] defence of DTC genomics in principle is not to be confused with the defence of existing DTC genomic services, which may be deficient in various ways. The point is that these deficiencies are not inherent and ineradicable' (p.4). So, contra Bunnik, I was not engaged in the na?ve, cheerleading enterprise of defending all existing forms of DTC genomic services, many of which are problematic in ways identified in the article. Instead, I argued that such services can, in principle, enhance autonomy if they meet certain conditions, and that this fact is sufficient to yield a pro tanto case for the legal permissibility of services that do in fact satisfy those conditions.

Putting aside this radical misunderstanding, I turn now to the three 'crucial considerations' Bunnik claims that I overlook in supposedly rejecting her truistic conclusion.

The first consideration is that 'genomic testing' is very heterogeneous, and that this limits our ability to make general moral assessments of such tests, including judgments about their utility. Again, it is odd that Bunnik reads me as disagreeing with this further truism. On the contrary, I emphasized that the medical actionability of DTC genomics depends on variables such as which kind of test is employed and which sort of condition is being investigated. Indeed, precisely because DTC genomic services exhibit considerable variety, I argued, it is wrong to endorse a sweeping skepticism about their utility, clinical or non-clinical.

From the fact that DTC genomic services exhibit this variation, does it follow that it is impossible to identify general principles bearing on their legal permissibility? This is what Bunnik suggests, but provides no argument. Many of the phenomena regulated by law exhibit a similar variability, but it does not mean that we have to resort to a case-by-case assessment of their permissibility, one that does not draw on more general considerations. Indeed, Bunnik herself, in offering an alternative approach to autonomy-based arguments for DTC genomic services in her final paragraph, seems committed to the possibility of the sort of general moral assessments regarding which she expresses skepticism. If the heterogeneity of DTC genomic services stands in the way of a general assessment based on Razian autonomy, why is such an assessment suddenly possible when we substitute Bunnik's favoured concepts of agency, control and freedom? Inexplicably, she seems to want to have it both ways: denying the possibility of a general moral assessment while simultaneously offering one.

Second, Bunnik claims that I 'confound' two distinct senses of autonomy, asking whether I argue 'that DTC genomic testing generates valuable options or that it is a valuable option'. Although there is a genuine distinction here, Bunnik does not explain why she thinks I overlook it and, if so, what trouble this causes for my argument. For the record, I believe that under certain conditions, DTC genomic testing can enhance autonomy in both ways: acquisition of the information it provides can itself be a valuable option, e.g. acquiring ones' raw data, knowledge of one's genealogy or the likely course of one's future health, and possession of this information can generate additional valuable options, e.g. to pursue family connections, or even to seek medical care, etc.(3,4)

Third, I come to perhaps Bunnik's key criticism, i.e. 'most of these tests do not generate (actionable) options at all, medical or non- medical'. Everything here depends on the slippery qualification 'most'. The success of my argument does not depend on showing that all or most existing DTC genomic services generate valuable options. It only requires a plausible case for believing that DTC genomic services are capable of generating such valuable options under feasibly attainable circumstances. In the article, I enumerated a number of valuable options such services are able to generate beyond clinical utility: enhanced knowledge of one's genetic constitution, participation in medical research, information about ancestry, and so on. Bunnik asserts that these options lack the value necessary for Razian autonomy, but in the absence of an adequate supporting argument, this remains an assertion. At one point, Bunnik appears to dismiss such utilities by saying there is a difference between perceived utility and actual utility. However, this distinction does not license the somber conclusion that the enjoyment people derive from DTC genomic services, e.g. by participating in research, fails to enhance their well-being. (5,6) Enjoyment, knowledge and accomplishment, which can be achieved through such participation, are familiar elements of human well-being.(7)

Finally, it is worth noting Bunnik's claim that autonomy-based arguments for a liberal regulatory approach to DTC genomic services should appeal to a narrow sense of autonomy, rather than the 'thick' Razian employed in my article. This narrow sense would, among other things, dispense with the requirement of an adequate range of valuable options. Bunnik's contention, summarily delivered in the final paragraph, is that autonomy-based arguments should instead rely on the less demanding 'values' of agency, control, and freedom to decide. Bunnik is certainly right that this would be an easier way of defending DTC genomic services. But the real question is whether it is so easy that it provides no real defence. Such a defence will be made out only if bare agency, control and freedom to decide are truly 'values' and, moreover, values with a claim to be respected and promoted through law and public policy. Yet this is precisely what leading philosophical critics of the narrow sense of autonomy, such as O'Neill and Raz, have called into questioned. In the absence of a response to such critics, Bunnik's alternative approach to autonomy remains under-motivated.

In short, for the greater part of her response, Bunnik wrestles with an opponent of her own imagining. To the extent that she genuinely engages with claims that I make, her contentions - about clinical/non-clinical utility and the proper understanding of autonomy - ultimately beg the question.

References:

1. Bunnik E. Do genomic tests enhance autonomy? J Med Ethics. 2014 Jun 30. pii: medethics-2014-102171.

2. Vayena E. Direct-to-consumer genomics on the scales of autonomy. J Med Ethics. 2014 May 5. doi: 10.1136/medethics-2014-102026.

3. Roberts ME, Riegert-Johnson DL, Thomas BC. Self diagnosis of Lynch syndrome using direct to consumer genetic testing: a case study. J Genet Couns. 2011 Aug;20(4):327-9. doi: 10.1007/s10897-011-9356-y.

4. Francke U, Dijamco C, Kiefer AK, Eriksson N, Moiseff B et al. Dealing with the unexpected: consumer responses to direct-access BRCA mutation testing. PeerJ 2013 1:e8 http://dx.doi.org/10.7717/peerj.8

5. Vayena E, Ineichen C, Stoupka E, Hafen E. Playing a part in research? University students' attitudes to direct-to-consumer genomics. Public Health Genomics. 2014;17(3):158-68. doi: 10.1159/000360257.

6. Vayena E, Gourna E, Streuli J, Hafen E, Prainsack B. Experiences of early users of direct-to-consumer genomics in Switzerland: an exploratory study. Public Health Genomics. 2012;15(6):352-62. doi: 10.1159/000343792.

7. Griffin J. Value Judgment: Improving our Ethical Beliefs (Oxford University Press, 1996), pp.29-30

Conflict of Interest:

None declared