Okay, I’ve occasionally blogged about the right to privacy for the deceased, so this article by Jo Marchant in New Scientist really caught my eye. Here’s how it begins:
Should we consider the privacy or reputation of the individual when analysing an Egyptian mummy? The assumption that ancient corpses are fair game for science is beginning to be challenged.
Though strict ethical guidelines apply to research on modern tissue samples, up until now there has been little discussion about work on ancient human remains. In a recent paper in the Journal of Medical Ethics (DOI: 10.1136/jme.2010.036608), anatomist Frank Rühli and ethicist Ina Kaufmann of the University of Zurich, Switzerland, argue that this is disturbing because research on mummies is invasive and reveals intimate information such as family history and medical conditions. And, of course, the subjects cannot provide consent.
“The human body, alive or dead, has a moral value,” says Rühli, who is himself involved in mummy research. He says that no matter how old a body is, researchers must balance the benefits of their research against the potential rights and desires of the deceased individual.
Read more on New Scientist. I’m glad to see a thoughtful discussion of the issue.
I can tell you from a communications law standpoint, a dead person has no right to privacy because a dead person can’t be harmed from any kind of libel or slanderous stuff you write or say about him/her. I imagine the same principle applies to medical science. So unless said Egyptian mummy left it in his will that nobody should cut him up, perform invasive procedures, take all his organs, and disclose all that information to the public (which I highly doubt is the case, considering mummies have already been cut up and had their organs removed for the whole mummification process; also most of these people who are mummified were done so because they had the money to do it, so they were most likely public figures and their burials were probably very public anyway), he doesn’t have anymore right to privacy than any modern day dead person.
Thanks for sharing your perspective, Kristina. Modern day dead people do have some privacy rights, however. For example, you can’t get their medical records unless they either named you as their personal representative or a state subpoenas the records as part of an investigation. New rules have been proposed for HIPAA that would relax those requirements (see http://journal.ahima.org/2010/07/21/change-proposed-disclosure-deceased-patient-records/). Note that the proposal would remove the protection for the medical records for people dead more than 50 years, but that proposal has been adopted yet, so as of now, their records are still protected.
Nor can their bodies be cut up for research or examined for research if they didn’t sign some pre-death consent (opt-in). I remember watching a special on TV a few years ago about how researchers wanted to try some DNA testing or other analysis on remains of a historical figure and had to first find a descendant who could authorize it.
In medical privacy and ethics, public vs. private figure is not as important an issue or factor as it is in communication law.
In my opinion, there’s a difference, perhaps, ethically between research conducting on long-dead remains where you don’t know the identity of the individual and cases where you do know the identity. The latter situation poses many more ethical concerns.