Now should be the winter of our discontent

The idea of ethics, including bioethics, is essentially to find rules that restrict what we can do.  Ethics otherwise has little meaning. But while we all like to talk about bioethics, and the Genome Institute has something like 3% of its budget statutorily dedicated to such issues, is this really more than 'safe ethics'?  Is there really much meaningful self-restraint, much less external constraint, on what we in genomics will do?

Exhumed skeleton; Richard III; Source: Univ Leicester

It is controversial enough what we find ways to permit ourselves to do when it comes to research on animals.  The protections exist, but if you were a mouse king you'd think them horribly weak.  The rationale always is that what we do to animals we can't do to humans (a questionable justification for sentient beings!) but also that, yes, well, it is horrific for the animals sometimes but it saves human lives!  Or, to be more exact and realistic about most, though clearly not all, of what is done to the millions of laboratory animals around the world, the results might plausibly, sometime in the 23rd century, make a difference to someone.  Perhaps.  A bioethical point of view might argue that stricter strictures might force much more serious attempts at using cell culture or other means to address the same problems.  With genomic technologies, that doesn't seem too fanciful.

When it comes to what we do to humans, we do have restrictions (we can't do some of the things the Nazis and earlier eugenicists did---though recent Israeli attempts to chemically sterilize types of Jewish immigrants they didn't find too savory raises disturbing echos about lessons not learned even yet).  But science is clever enough to find ethical-sounding ways to get around awkward issues like sharing profits or patents with study subjects, confidentiality, truly informed consent and the like, to enable us to do the work we are determined to do. These are subjects open to much fair debate, and there are legitimate, serious, even ethical, reasons to defend various sides.

But today we're writing about a different kind of bioethical self-restraint--or, rather, its absence.

A what? A what?  My kingdom for a headline??
If you have rights when you are alive, such as of privacy and confidentiality, do such rights follow you after death?  Native Americans, for example, do have collective tribal rights to control what is done with burial finds of their ancestors, but how generalizable should such rights be? 

We are responding to the Big Splash story of the purported finding of the bones of King Richard III (of Shakespeare and Bosworth Field fame).  A skeleton "deformed, unfinished, sent before my time" whose various anomalies could be interpreted as those referred to historically in RIII's context was found, and DNA testing done to see if he is (or might be) RIII himself.  The DNA testing was of mitochondrial DNA from what is in the news stories, and apparently showed a direct descent of the skeleton through the same female lineage as the investigators confirmed in a living descendant.  Since there may be other relatives lying around in this part of England, so to speak, there is always the possibility that RIII isn't really RIII, but the attribution seems likely.  And while it's true the skeleton was "rudely stamped and not shaped for sportive tricks," whether it really was Richard is somewhat beside our point.

Exhumed skull of famed Danish astronomer Tycho Brahe, CREDIT: Jacob C. Ravn, Aarhus University [Full Story]

RIII isn't the only celebrity unearthed by the grave-robbers.  We have recently seen Tycho Brahe excavated (we blogged about this at the time) and there have been others done or suggested (Abraham Lincoln, King Tut, Billy the Kid, the final Russian Tsar's family).  The key to is here is that these individuals are publicly named and whatever is found is splattered across the pages.  Without the personalization, there's no story.  But don't these people deserve privacy not just from scientists poking with great relish around in their remains, but also from announcing their findings publicly?

"Sent after my time", too
We think so.  We think that the dead should retain their privacy.  If ancient burials are allowed to be excavated, as they have been and are worldwide, it should be enough to characterize group traits and individual traits that are, perforce, anonymized because we don't know the individuals' names.  Unlike modern donors of DNA samples, they did not provide any sort of consent for their privacy to be invaded.  For King Richard, being gawked at in his own time was more than enough, thank you.

Do we now not "seem a saint when most we play the devil"?

Mummy of King Tut; Source: National Geographic

This is juicy attention for the scientists and, perhaps, even worth a grant or two.  We're only human, and naturally respond to praise and attention.  The stories lead to nice sales for journals, magazines, and television programs.  Naturally, as is reported, the journalists and scientists call this an 'historic'  or 'dramatic' discovery that could  "bring about a reassessment of his reign." It's the usual hype, but it's more than that.  We just can't resist milking every possible story for melodrama, a subtle or not-so-subtle way of enticing the public.

But is it right to do this at others' expense, who did not agree to it?   Are we here just taking advantage of our blogospheric rights in an over-the-top rant?  Well, consider this:  suppose the findings were of a close relative of yours, say, your deceased child, father, or grandfather--depicted, analyzed, related to rumors, portrayed as a curiosity, and named in the world's media.  Would that make a difference?  If so, what about, say, your great-grandmother?  At what point in your genealogy does naming names and personalizing a finding become legitimate sport for the media?  Put another way, if for moral, religious, or ethical reasons you feel that the sanctity, or even just the dignity, of a deceased person is important, then just when does a person become just a 'body'?

There is another point.  The attribution could be wrong, subjecting RIII to needless public scrutiny.  The reported source of the confirming DNA is a 17th generation descendant, the end of the line apparently, who lives in London and gave a sample of his DNA.  He has a perfect right to provide DNA to identify his own characteristics, but--and this raises all the well-known confidentially issues about DNA analysis!--in our view, he has no right to give his consent for his DNA to be used to identify and characterize his relatives, be they dead or alive.  Assuming no lab errors or over-interpretation of the sequence results, in principle we could trace the DNA sequence back to some original ancestor carrying that sequence, and then forward along the tree of descendants, including RIII's branch.  But lots of other people would likely had the same sequence, lived in the same area at the time, been close or distant collateral relatives engaged in the same battle, and so on.  So while the evidence is consistent, it is not definitive (as the authors did acknowledge).

We may have extreme views on this.  Indeed, we are just about the only people in the world who seemed to have thought that the best selling and widely lauded book about Henrietta Lacks, an African-American cancer victim whose HeLa cells are available, used in research labs worldwide, was a travesty -- she was exploited in life, and exploited in death.  The media loved it, and only a few voices other than our own reacted about this as a deep intrusion into her privacy and that of her relatives.  We blogged about that here. 

What is bioethics?
Is it yet another indicator of the manifest lack of serious ethical constraint of even bioethicists (who don't seem to complain much about these things)?  Indeed, the main concern of bioethicists, if you get right down to it, is not getting too cross-wise with the scientists they are supposed to constrain.   Nobody admits this publicly, of course!  Bioethcists' jobs should not in any way depend on that congeniality, nor on having some salary paid from anybody's grant.  To apply real ethical constraints, professional ethicists should be prohibited from being paid on any grants whatever, unless they be from purely disinterested parties.   But that, of course, would be a genuinely ethical policy that universities, especially medical schools of all places, who need the overhead and don't provide safe, hard money to pay ethicists, cannot abide.  If we can't even constrain scientists from sporting with the departed, how can we expect ethical self-constraint in anybody else?