July 2010
Need An Organ? Find Your Donor Via Facebook!
Apparently Facebook isn't just for playing MafiaWars anymore. It's also for finding living unrelated donors to give you their organs. Seriously.
The six degrees of separation that we all experience via Facebook makes those who have long been waiting on organ transplant lists feel as though the wait can end if they just reach out via their network...all with a simple status message.
According to TopNews.com, one 53-year-old woman did precisely this. After being on dialysis for 8 years, the desperately posted a message on her Facebook page and had 200 responses within a day. From those responses she found a donor and received her transplant.
With 84,000 people waiting for a kidney transplants each year, certainly many more will be tempted to use social networking sites to find an organ, but depending upon the closeness of the relationship and the nature of it, aren't these precisely the kind of directed donations of organs that we are worried about, regardless of whether they come from Facebook or not?
Sure family members choose to give kidneys or portions of livers to family members all the time, but is there something different about soliciting organs via Facebook? As long as no money changes hands, many would say no--it's simply a way of expanding your options. And perhaps it is finally a way to make use out of having 250 or 850 "friends" whom one never really "talks" to. When one is in need, perhaps one of these "friends" will come through indeed.
Frankly, I am ambivalent about Facebook organ procurement. In a way, it is no different than placing a classified ad or running a billboard sign or any other method of advertising or solicitation, except that it is likely to be much more effective because one is reaching out to one's "network" of "friends". And if this reduces the number of people waiting on transplant lists even the smallest fractions, I'd be hard pressed to say it is a bad thing.
Summer Johnson, PhD
Should a Confessed Killer Get a Second Chance from a Donor Liver?
Arthur Caplan in his MSNBC column discusses over a confessed killer receiving a liver transplant. How could someone who himself admitted killing his wife jump to the head of the queue to receive one of the scarcest resources in the world? The answer is simple as Caplan put it:
"The current system for distributing organs makes no exceptions either for murderers or attempted suicides. If there is a matching organ then the person who is the most in need, which Concepcion most certainly was, has top priority for it."
Of course, getting into the business of allocating organs according to a person's societal worth is messy stuff, but there is something just intuitively obvious about this case that suggests that this patient, no matter now medically needy, perhaps should not have received the liver ahead of, um, whoever else was on the list.
To read Caplan's entire MSNBC column and his take on the issue, click here.
Summer Johnson, PhD
Could Posthumous Egg Donation Ever Be Morally Acceptable?
A recent report from NEJM about a surviving husband to have the eggs of his dead wife harvested in order to create a posthumous child has raised the question of gender equity in the posthumous harvesting of gametes. With the harvesting of sperm from dead men having been well-explored, women's reproductive material is also entering the post-life harvesting category.
The concerns in the particular NEJM case were clear: the wife had recently suffered irreversible brain damage as the result of a heart attack, life support was removed, and then the husband asked to have the respirator turned back on (yes, turned back on) to keep his wife alive long enough to have the hormone injections put into her necessary for the harvesting of her eggs. Luckily, the medical team did not accede to his request.
Why?
According to the NEJM article, the patient had never clearly expressed such wishes, nor had the husband. Until now. Moreover, she was on oral contraceptive pills to prevent pregnancy. No advance directive existed--not that it would have likely covered posthumous reproduction!
So what could have ever justified such a case as this? In my mind, nothing. But could there be such a case of posthumous egg harvesting, of course. In a case where a married woman suffers a tragic, sudden, life-threatening event and where she had previously expressed to her partner/husband/family the strong desire to have a child, one could strongly argue for the posthumous harvesting of her eggs.
And yes, I think this is the same standard to which the posthumous harvesting of sperm should be held to as well.
Unfortunately, this NEJM case was not one of those. The pull that the husband must have felt not to "lose" his wife must have been incredible, but the answer was not to put her through a medically inappropriate procedure, keeping her alive unnecessarily and harmfully to try to result in a reproductive act that neither she nor he would have wanted under ordinary circumstances.
Summer Johnson, PhD
A Code of Silence
We all know that there is honor among thieves, but apparently a similar code exists among physicians, both good and bad. The nature of the pledge? Not do no harm or respect patient autonomy, but "don't ask, don't tell." And not the military variety.
According to a recent report in JAMA this week, one-third of physicians fail to report colleagues who suffer from drug, alcohol or other mental illness issues that may impair their ability to adequately treat patients. As described by Modern Healthcare, " 5% of all doctors surveyed knew of an impaired or incompetent doctor but failed to alert proper authorities."
Why this code of silence? Perhaps physicians do not want to be their own morality police. Perhaps they fear blowing the whistle on their peers for questionable behavior will have the mirror turned back on their own behavior. Maybe it is often difficult to draw the line between the physician who often is the life of the party at hospital social events and who chronically has one to many drinks and one who appears to show up to work with a hangover, or even worse drunk.
In any case, it would be foolish to think that physicians are the only profession who turn a blind eye to peers who suffer from addictions and illnesses that impair their practices, but rarely do those impairments put lives in jeopardy. (Impaired lawyers can just as seriously screw up cases and accountants can result in IRS audits or worse.)
No doubt it is difficult to stand up to a peer and especially a friend and tell them that they have a problem and that they are putting patient's lives at risk, but better that then knowingly letting them do it, violating medical ethics, and being culpable in the process.
Summer Johnson, PhD
Ethics Comes Early in Washington
Bright and early from Washington DC, PCSBI dives into ethical deliberation about synthetic biology. The report from Day 2:
The Duh! Moment: a recent study has found that the public lacks awareness about synthetic biology. Media reporting results in the public having only a cursory understanding of the science.
The European Perspective: unsurprisingly Europeans are much more interested and much more concerned in the potential harms involving synthetic biology. They are already studying the ethics, risks and benefits. Think GMOs.
Perhaps the only real substantive ethics discussion came from AJOB Neuroscience's own Paul Wolpe who provided an overview on religious perspectives related to synthetic biology as well as four examples of synthetic biology.
Some of his statements were somewhat surprising. Wolpe stated that religious communities are relatively unconcerned about synthetic biology. I have no reason to doubt this claim, but it is certainly surprising.
First Wolpe asked the Commission to consider the ethical notion that "human beings are co-created by technology" and "technologies reciprocally recreate us". This should fundamentally alter how we think about these technologies.
Wolpe argued that new technologies create new problems that call for new technologies to solve those that then create new problems themselves. In short, technology begets problems which beget new technologies in a never-ending problem-solving and problem-creating technologies. The solution? Who knows. But at least we should be aware of the problem. Thanks, Paul!
Third Wolpe asked: "How do we understand the ethical implications of speed?" Synthetic biology has the capacity to change the evolutionary timeline, speeding up the time of evolutionary change and we have no sense of what impact this may have upon the environment or a whole range of species.
Thus being aware of this, he asks "How to you create a policy of incrementalism?" Paraphrasing Wolpe here: How do you create a policy that allows for reasonable progress along a certain path when you know that at the end of the path is an undesirable result? Again, a great question without an answer. This is for the Commission to figure out.
SUMMARY: Having spoken to numerous commission members this morning, the scientific presentations thus far were far more well-developed and perhaps useful than the ethics presentations. (Not in any way to disparage my ethics colleagues who did excellent job in presenting their views on syn bio.)
As has been argued with nanotechnology (a oft used analogy in the discussions over the last two days), perhaps many believe there isn't much "there there" in terms of philosophical heavy lifting in regard to synthetic biology. Either this is because many have yet to wrap their minds around the applications and thus implications of synthetic biology for science and society. Perhaps it is because many have not been able to make the distinction that synthetic biology's lack of exceptionalism does not mean that there are not important ethical issues that require addressing. It simply means that they are the same ones that have been previously addressed in genetic research, human cloning, stem cell research and other well-trodden areas in bioethics research.
What is obvious is that there are significant domestic and international regulatory and oversight challenges in dealing with synthetic biology with which the Commission must grapple. Moreover, the other overarching theme after two days of deliberation is the sensitivity that must be given to religious points of view as regards this issue.
The absolute highlights of the last two days were the questions posed by Chair Amy Gutmann that really went right to the heart of the issue. In the roundtable at the end of yesterday's session, her charge to all of the participants to "provide a single recommendation to the Commission" really forced clarity of thought and a brevity that really moved the discussion forward. This morning, her question to the ethics panel as to the "single moral value" at stake in synthetic biology again aspired to crystallize the discussion. This ability to propel and clarify the discussion was remarkable.
As Drew Endy put it yesterday, "This is the best discussion on synthetic biology I have attended." He attributed it to Executive leadership. I would attribute it to commission leadership, the expertise of those who testified and an innovative format for the 2-day meeting itself. If the energy level and creativity of the Commission remains this high, one can only expect it will translate to its report. (Of course whether that translates to Presidential attention, of course, is another story altogether.....)
Summer Johnson, PhD
Puttin' On the Ritz...With the PCSBI
Writing live from the Ritz Carlton Washington DC at the Presidential Commission for the Study of Bioethical Issues (PCSBI), here is what I have heard so far....
Two back to back ethics sessions at the first meeting of the PCSBI focused on two very different aspects of synthetic biology--the topic assigned to the commission by President Obama just a few months ago.
Notably, after the morning's scientific sessions, the first topic was risk and benefit. The session included an evolutionary biologist , an risk assessment advocacy group member, and a bioethicist known for analyzing risk and benefit in human subjects research. Is there some implicit message in putting risk and benefit ahead of ethics on the meeting agenda? Perhaps...or perhaps not.
The commission members ravaged the arguments made by ETC's Jim Thomas for arguing for a ban on synthetic biology, with the commission's chair President Amy Gutmann remarking in an almost declaratory statement, "Our democracy does not ban science nor does it permit it." SPOILER ALERT: I would wager at this point that it is clear that the commission is not going to be advocating a ban on synthetic biological organisms.
Following on the heels of risk and benefit was the discussion of what was defined as "ethics" including testimony from Greg Kaebnick of the Hastings Center and Allen Buchanan of Duke University.
Buchanan described much of the language as "depressingly similar" to the debate used 28 years ago when the "Splicing Life" report was written for the President's Commission including the language playing. Moreover, Buchanan suggested that perhaps the risks have been over-emphasized to the detriment of ignoring the benefits of this technology.
Perhaps the biggest problem with the commission's first day of activity is that they tried to accomplish too much too quickly. The first day's agenda was crammed with scientific sessions, risks and benefits, and ethics as well as a roundtable--all with opportunities (ideally) for public comment. I was astonished when a single questioner was permitted to read aloud a mini-dissertation for five minutes or more consuming all of the public comment time and leaving R. Alta Charo of the FDA standing at the microphone at the close of the public comment period.
The commission's ambitious agenda shortchanged its most important feature--its emphasis on democratic deliberation and public input. But that is a kink that can be worked out with a shepherd's crook or a loud cowbell for rambling public member and enforcement by the Chair or Executive Director.
That said, I applaud the commission for its innovative use of video and live streaming of the commission's events. I hope that they will publish the number of downloads they receive and republish the video on social media websites such as Facebook and YouTube.
Moreover, I have never seen such a turnout for a commission meeting except maybe in the Dolly days. One can only hope that this turnout will continue. If it can be attributed to anything the commission did, I hope it will continue these efforts.
To be continued....
Summer Johnson, PhD
Therapeutic Misconception At Its Worst
The International Society for Stem Cell Research (ISSCR) has created a website that aims purportedly to help patients assess the claims made by stem cell companies and researchers offering cures via stem cell research.
On their dedicated website, www.closerlookatstemcells.org, ISSCR warns "patients" of potentially costly, unproven, and harmful "treatments" that some have described as the "21st century version of snake oil".
But the true hucksterism here is in fact the ISSCR website itself which promotes precisely so many of the purported harms that it allegedly is trying to prevent. Let's just start with the language on the front page. "A Closer Look at Stem Cell Treatment." Treatment. Perhaps I missed a step in the advances of stem cell research. Did we quickly jump over the experimental phase and already move into having effective stem cell therapies? Someone must have hit the fast-forward button while I was blinking.
Just on the landing page of closerlookatstemcells.org alone are the words "clinic", "patient", and "treatment" all of which suggest that stem cell research is much closer to medical care than what it is which is in fact experimental human subjects research.
But it gets worse. The "What to Ask" page begins with a section entitled "The Treatment", but it doesn't take more than about 1/3rd of the page for the language to slip back into "clinical trial", "the study", "federal oversight", "IRB", and other mainstays of actual human subjects research. Too bad you have to read down below the fold and understand the difference between that language to really comprehend what it means to be a consumer of "stem cell treatments" from "clinics", as ISSCR describes them.
So not only does this site actually induce the therapeutic misconception, I would argue that it also induces consumer confusion of the highest order. If I were even a relatively educated patient reading this site, I would have to wonder, "Are they talking about medical treatment? Or this research? Am I a patient? Am I a research subject?" According to this website, one could be either. And maybe that could be true. 5 years from now. But not today.
The true icing on the cake is ISSCR's goal for the website on their FAQ page. The purpose of closerlookatstemcells.org is "provide patients, their families and doctors with as much information as possible so that they can make an informed decision about stem cell-based treatments. The ISSCR respects patients' rights to utilize this information in the manner they see appropriate and to make their own choices."
What information is ISSCR providing, you might ask? A list of stem cell research organizations that meet two criteria: 1) involvement of a "medical ethics committee" to "protect the rights of the patient" and 2) documentation of the involvement of a federal regulatory agency. Wow. Now that is a high bar. And based on these standards and being listed on this website, is this not an implicit endorsement of the organization in the eyes of an inquiring patient? It would be hard to argue otherwise, even though they do.
I am usually reluctant to argue against patient education and empowerment, but this website does precisely the opposite. It only muddies the waters and will confuse patients desperate for cures who are turning to stem cell trials as a last resort and want very much to believe that the research laboratories that they are walking into are "clinics" and the trials they are enrolling in are "therapeutic." Unfortunately, that is not yet the case. And ISSCR should just come out and say so.
Summer Johnson, PhD
