Abstract
One troubling issue that comes up in the context of some research, particularly genetic research, is the discovery of incidental findings that are relevant either to the participant or, more rarely, to someone else.
It is commonly thought that if this information is robust and reliable and the incidental finding is significant enough (a serious health condition or predisposition towards a disease), then the researcher is morally obligated to disclose that information to the participant or the relevant other. There is an interesting theoretical question of what information is relevant enough and serious enough to warrant such a disclosure – for example, given that genetic studies of families often unearth non-paternity, is there an obligation to disclose this (given the importance of accurate family histories for health reasons), or should it be left alone given the psychosocial sensitivity of the issue? Nonetheless, for most of the time it is thought that when you discover an incidental finding which has a significant health import for one of your participants there is a clear and direct obligation to disclose that finding to them.
Incidental findings are burdensome for researchers – they run the risk of upsetting participants and take time and effort away from the core business of the research. It is unsurprising, therefore, that researchers often try to set up their research to minimize the likelihood of either making incidental findings or preventing the possibility of disclosing them by, for example, anonymizing the samples in a manner that cannot be broken. This then obviates the ethical obligation to disclose because either there is nothing to disclose or you have incidental findings and no one to disclose them to.
I want to suggest that this practice is at the very least ethically questionable, and is probably actively morally problematic. In effect, what the researcher is doing is structuring their research to avoid generating certain moral obligations towards their participants. But I am not sure that those obligations don’t always exist and, therefore, rule out avoiding having that duty. In effect, the researcher has two options: first, where they accept some relatively minor burden and provide potentially great benefit to someone who has given of their time, effort and energy to help them; or, second, where they avoid that minor burden and fail to provide that potentially great benefit. If we think they are morally obliged to disclose the information if they have it and can do so, then it seems to me to follow that if they can get the information at little cost (as part of just doing the study) then they are obliged to do so, and not try to obscure their moral obligations via a veil of anonymity.
If this is right, then researchers ought to embrace rather than hide from incidental findings; they are a chance to reciprocate the benevolence of research participants in giving of their time and effort to the research endeavour.
In this issue
In ‘Closing the barn door: Coping with findings of research misconduct by trainees in the biomedical sciences’, Barbara Redman and Arthur L. Caplan grapple with the increasing problem of research misconduct in biomedical sciences trainees.
John Biggs and August Marchesi present an empirical study in ‘Information for consent: Too long and too hard to read’, which argues that informed consent documents in Australia still need some work.
In ‘Research ethics committees: The ineligibles’, Stephen Humphreys argues that the current regulations in the UK prevent some people from sitting on research ethics committees in a confusing fashion.
In ‘Reflexivity in practice: Ethical dilemmas in research with potential living kidney donors’, Beatriz Cuesta-Briand, Natalie Wray and Neil Boudvile discuss the ethical issues that arose while they conducted some research with potential donors, and how they resolved these.
Finally, in ‘Revisiting consent for health information databanks’, Stephan Millett and Peter O’Leary argue that specific individual informed consents are not the best fit for larger scale research projects.