My Genome and My Children’s Privacy

The immortal cancer cells that were harvested without permission from Henrietta Lacks in 1951 continue to provide valuable lessons – not just for biology and the practice of medicine, but also in medical ethics and even at a more general level.

The issue of consent by family proxy is not unique but the question of its retroactivity and the impossibility of respecting its denial (due to the already widespread distribution of cells from the culture by the time they found out) made it especially problematic, and now there is a new wrinkle.

Some family members who agreed to the use of the cells for research purposes are now concerned that when such research includes publication of the full genome it impinges unacceptably on the privacy of those who share large known fractions of that genome.

It is quite reasonable to argue that the previous consent did not cover the genome publication, since at the time that was not a known possibility so the consent cannot be said to have been fully informed; but again the horse is already out of the barn as the data have already been circulated, and although the number of known copies is small there is no way of tracing them all and guaranteeing that no further copies will ever be made.

But aside from the issues of retroactivity, proxy, and informedness of consent, we now have also that of third party privacy – which actually applies to the publication of any genome, and indeed the question of whether one has the right to publish one’s own genome in the face of privacy concerns from (present and future?) relatives is itself an ongoing topic of discussion.

Do I, or you, have the right to publish our own genomes without the consent of the unborn descendants about whom those genomes might provide partial information on matters that they might wish not to have revealed?

Rebecca Skloot raises the HeLa issue in an essay in the NYTimes Sunday Review but a response by Michael Eisen points out that she appears to confound “how to retroactively get Henrietta’s permission to experiment with and publish about her cells” and “the seemingly related  issue of whether publication of the HeLa cell genome is an invasion of the privacy of Lacks’ living relatives”. The first involves  consent (retroactively by proxy) on behalf of Ms Lacks for the removal and study of tissue, and the second the second is on behalf of her relatives for publication of information which might invade their privacy (and would arise even if Ms Lacks had in fact given fully informed consent back in 1951). The latter question of third party privacy is also the clear focus of  a subsequent article in ThinkProgress.

The issue is not just a sub-case of the basic proxy consent issue, with the donor (or in this case her proxy) giving consent by proxy for release of information about the relatives, because in this case the relatives in question may be available (or about to become available) to give their own consent, whereas for a deceased person the most affected people going forward are the immediate present family members, so in matters of what happens to the body obtaining their consent might well be seen as sufficient.

Nor is it trivially resolved by arguing that the individual herself, or if she is deceased her closest living relatives, have the right to give consent because of being the one(s) most directly affected by release of genomic information.

There might be some argument that the closest relatives (siblings and children) are most likely to suffer privacy invasion because they share the most genes, but it may be that combined with other information the smaller shared genome fraction of a further descendant might be particularly revealing  (eg if HeLa had the red headed axe murderer gene then a grandchild with red hair might have greater privacy concerns than the brown haired child who was his parent – or even than HeLa herself had she been the one giving consent).

If red headed axe murderer correlations are rare though, then perhaps we can apply the probable information idea slightly differently – not just to the chance of having a particular gene, but (in advance of the sequencing) to the chance of having any potentially embarrassing information revealed. If we take that view then the closest surviving relatives can give consent for a deceased person and the individual’s consent can override the privacy concerns of his or her relatives.

But it is not obvious that this is really fair. Just because I am most at risk, does that entitle me to cause a lesser risk for others? It may seem not, but we commonly allow the individual to elect a risky surgery without giving a veto to dependents who may be at financial risk if it goes wrong.

Some people think that professional Philosophers have  special skills for actually answering such questions.  I don’t.