Wednesday, February 6, 2013

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?


Anonymous said...

A contrarian way to look at this is to note that it gives later generations the opportunity to remember some of their ancestors, with more accuracy.

Ken Weiss said...

There are two issues. First, splashing things for the media doesn't guarantee accuracy. And second, the ethical issue is whether we have the right to air that corrected view of our ancestry publicly.

We have as much human interest as anyone, and we're not prudes. And an obvious fact is that grave-peering isn't going to be restrained, whether or not it should. But the deeper issue is where restraint or constraint on our behavior lies.

Richard III is one of my favorite of Shakespeare's plays and the question of the murder of the boys in the Tower is also a fascinating one. But so might, say, _your_ parents' private behavior be exciting to probe into, and exploit publicly with journalists and camera crews close at hand, and I imagine you'd greatly object to that.

It was the international, gleeful splash of this story that led us to use it to relate to the broader question. That, right or wrong, was our point and RIII was just the vehicle for trying to make it.

John R. Vokey said...

``It was the international, gleeful splash of this story that led us to use it to relate to the broader question. That, right or wrong, was our point and RIII was just the vehicle for trying to make it.''

Exactly. And I really thank you for making it. That perspective was conspicuously lacking in all the media attention.

Ken Weiss said...

A public figure's public acts are legitimately of public interest, especially when politics are involved.

But even a public figure, even in his or her own time, is accorded at least some privacy. I think that most honorable people think the paparazzi are immoral and should be restrained. Well, so should the 'post-paparazzi', even if we call them 'scientists'!

Ed Hollox said...

(reply part 1)
Dear Ken
Another thought-provoking piece on your thought-provoking blog. But on this one, I have to disagree with you, both on your criticism of the Richard III work and on the more general point you are trying to illustrate.
First, my disclosure statement. I’m an employee of the University of Leicester, but I’m writing in a personal capacity, and my views do not reflect the views of the institution. I’m also not in any way connected with the Richard III project, although those who are involved are also my friends and colleagues, and I am motivated to write this in part to defend them.
Your main claim, as I understand it, is that Richard III should not have been the subject of an archaeological dig because of the former King’s right to privacy. Particular individuals, who have immense historical and cultural importance, should not be studied if a name can be put to them. As I quote “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?” What if a historian had discovered the private diaries of Richard III? These, in all likelihood, would have revealed much more about the man, much more than his archaeological remains. The historian should not publicise or publish this find? He or she should, in your words, perhaps use the diaries “enough to characterize group traits” and not reveal the source. If not, what is so special about skeletal remains that are 500 years old rather than document remains that are 500-years old?
You say that the work is “even worth a grant or two”, but criticise the media presentation of the story. I agree with you, in that I’d have much preferred the press conference to be at the same time as the peer-reviewed paper. The peer-reviewed paper will be coming, and it will contain much more historical, archaeological and genetic evidence which may, I hope, counter any doubts that we both have about the identification of Richard III. The reason why all this information could not be given at the press conference is that there is, I believe, a pre-publication agreement with a journal which dictates the level of information that can be revealed before it can be called publication, and therefore ineligible for the journal. In addition, my colleagues are excellent scientists (and certainly not “post-paparazzi” as you suggest) and would want to be sure of all their data and analyses before discussing it in public.

Ed Hollox said...

(reply part 2)
I suspect that there are three reasons why the press conference was brought forward. Firstly, the news would have been leaked to the press, as it had been partly before the press conference (, and therefore the full story might not have been reported with the balance and accuracy that might be desired.
Secondly, from 2014, 20% of the amount of the university’s block income for research from the government will be determined by impact, which is defined as any social, economic or cultural impact or benefit beyond academia. Yes, that includes “nice sales for journals, magazines and television programs”. It’s easy to criticise this, and many of us including me do have deep concerns about where this emphasis on impact might lead, but I am not facing the decision on which department to close, and who to sack, following a cut in research income. It is also easy to criticise from a position of comfort; Penn State has an endowment of $1,700 million while Leicester has an endowment of $7.5 million.
Thirdly, and perhaps most importantly, is the competition for undergraduate students. In the UK we have moved to an environment where undergraduates pay fees for higher education, and universities that over-recruit students expand, and those that under-recruit are cut. This has been quite a shock to students and their families who have to face this bill in the middle of the worst recession since 1920 ( The result is that competition for good undergraduates is fierce, and anecdotally at least, the “Big Splash” certainly has led to interest and excitement across the UK. This is surely not a bad thing.
To return to your broader theme, you also suggest that public figures should have special protection, while no such protection should be in place for the common people who are likely to be anonymous. This is not really to do with anonymity but with public interest; I doubt whether anyone would be interested if one of my ancestors, farm laborers all, had scoliosis, even if he was named. So in that case, there is no reason to name him, it adds nothing to the social or cultural context of the finding. However, in the case of Richard III the name is all, otherwise he is just a well-fed bloke from the 15th century with a spinal condition. So it is not his private life that is critical here but the public image of the person that is “Richard III”. Shakespeare was happy to portray him as the personification of evil, and this play has had, and will have, much more cultural impact than the recent studies ever shall. So, again, why should his life be fictionalised without his consent but archaeological analysis prohibited?
In contrast to your argument, there is a strong argument that because he was a public figure, because we can give him a name, because he was a king, that he should be scrutinised more than a commoner. Those who take on the mantle of public life and wield power over other people should be subject to more intense scrutiny by others, both in life and in death.

Ken Weiss said...

I appreciate your comments. I'm aware of the UK's attitude towards university 'ranking', the competition for students, and all of that. To me personally, that doesn't justify, even if it explains, the issue of violation of privacy.

I certainly understand your points about RIII's importance and in that sense his forfeiting of privacy rights. Personally, I don't agree about the ethics of revealing his identity based on DNA, though I certainly realize that a private diary would be released and nobody (perhaps not even I!) would think much about whether that was ethical.

We don't like the ballyhoo methods of science, nor its invasiveness and so on. But we were using RIII's DNA story to raise both some scientific questions about accuracy of interpretation and, mainly, as a foil for discussing the human subjects protection issues.

And, of course, we like the play about him!

Anne Buchanan said...

As always, these things turn out to be more complicated when more of the story is known, so thank you, Ed, for more of the story. It seems to me that the current bruhaha over the sequencing of HeLa cells is rather an echo of the Richard III story. The ethical issues are yet to be worked out re. using genetic data that is effectively in the public domain, but pretty clearly once the HeLa cells were no longer anonymous, there should have been a moratorium on using them in any way that could reveal genetic information about Henrietta Lacks or her relatives. But where do we draw the line? Should this apply to people long dead, with no living relatives? Neanderthal? When scientists have vested interest in deciding such privacy-invading decisions in their own favor, I think it shouldn't be up to the scientists alone to make those decisions. Practically speaking, though, it may turn out that the scientific community will establish the ground rules, rather than the law, after a healthy public airing of the issues.

Ken Weiss said...

Anne refers to our 3/25 HeLa post, much later than the one on RIII. But the issues are not wholly transparent and each of us will have his/her own view.

What about, for example, cloning passenger pigeons? Should that be OK, to give the species a new lease on life? Will it or they be able to live normally being born (hatched?) in a cage in isolation? Besides the media-fest that would engender, most scientists would say that's OK if the animal would have a decent life under such circumstances.

But what of ideas bruited about suggesting the cloning of a Neandertal? Would that person (that's the right word for him or her) have civil rights? Be caged on display in a zoo? Be experimented on? Would science have overstepped its bounds in doing that? If it becomes technically possible, is there any way that it would be, or even could be, prevented?

Or, if it come to it, what about cloning RIII or King Tut or Tycho Brahe?

I personally think there are many serious and legitimate ethical issues here, and I personally think science should be reined in, in these regards. But could we be or would we be? If not, then one might ask (at least, I would ask) what the point of ethics is, where are the boundaries of restraint?