The Enhancement Debate: Bona Fide or Frivolous?
John Lantos, MD
John B. Francis Chair in Bioethics
jlantos@practicalbioethics.org
The debate about “enhancement” is one of the most difficult debates in bioethics today.
The difficulty arises because the line between therapy and enhancement is so fuzzy and indistinct as to almost disappear. In domains of medicine as different as reconstructive surgery, psychopharmacology, genetic screening, or hormone replacement, some uses of biomedical technology seem to be bona fide treatments of disease while others seem to be frivolous lifestyle enhancements or luxury consumer goods.
This review by Ryan Lawrence of three recent books makes me want to go read the books for their defense an expanded notion of therapy. Then, I’ll need to read the report of the President’s Bioethics Council, Beyond Therapy: Biotechnology and the Pursuit of Happiness. (http://www.bioethics.gov/reports/beyondtherapy/index.html) for a critique of such views.
Then I’ll reread Carl Elliott’s wonderful book, Better Than Well, about the ways in which our desires for self-improvement transcend medical treatment.
Biomedical technology offers many possibilities for better health. It also offers irresistible opportunities for other forms of self-fulfillment – better athletic performance, more attractive appearance, better sleep.
Ultimately, the key question may not be whether such uses of biotechnology are morally acceptable but, instead, which of them ought to be publicly-funded entitlements and which should be privately purchased commodities.
Link: Practice Makes Perfect, The Weekly Standard, June 30
John B. Francis Chair in Bioethics
jlantos@practicalbioethics.org
The debate about “enhancement” is one of the most difficult debates in bioethics today.
The difficulty arises because the line between therapy and enhancement is so fuzzy and indistinct as to almost disappear. In domains of medicine as different as reconstructive surgery, psychopharmacology, genetic screening, or hormone replacement, some uses of biomedical technology seem to be bona fide treatments of disease while others seem to be frivolous lifestyle enhancements or luxury consumer goods.
This review by Ryan Lawrence of three recent books makes me want to go read the books for their defense an expanded notion of therapy. Then, I’ll need to read the report of the President’s Bioethics Council, Beyond Therapy: Biotechnology and the Pursuit of Happiness. (http://www.bioethics.gov/reports/beyondtherapy/index.html) for a critique of such views.
Then I’ll reread Carl Elliott’s wonderful book, Better Than Well, about the ways in which our desires for self-improvement transcend medical treatment.
Biomedical technology offers many possibilities for better health. It also offers irresistible opportunities for other forms of self-fulfillment – better athletic performance, more attractive appearance, better sleep.
Ultimately, the key question may not be whether such uses of biotechnology are morally acceptable but, instead, which of them ought to be publicly-funded entitlements and which should be privately purchased commodities.
Link: Practice Makes Perfect, The Weekly Standard, June 30
Labels: bioethics, medical enhancement, research ethics
posted by Practical Bioethics at
9:12 AM
7 Comments:
How quickly your viewpoint would change if YOU were personally on dialysis or needed some other organ, and had minimal chance of getting a call that a match had been found. You have no idea of what it's like to lose a member of your family; how dare you take the moral high ground and insist others follow your flawed opinion.
Visit our website for more information. A blog is coming soon.
< http://www.donate-for-life.com/ >
I've heard some suggestion that the "incentive" for organ donation might be guaranteed, free health care for the rest of the donor's life. I would be interested in people's thoughts about that kind of incentive.
Incentives for organ donations has prompted vigorous debate for a number of years. Here's a back and forth between Richard Epstein of the University of Chicago and Dr. Atul Gawande on slate.com -- http://www.slate.com/id/3680/entry/24109/
As a former Organ Procurement Organization (OPO) Medical Director and a physician who has participated in medical ethics committees and consultations at several institutions, I have some thoughts on the topic which I hope may add to the discussion.
First of all, I have a strong aversion to any changes that could lead to any sort of open market for organs. When it comes to payments for organs, there are important principles of human dignity that I believe should take precedence over teleological arguments about increasing the organ supply or respect for individual freedom and autonomy to make individual decisions. There are limits to freedom, autonomy and self determination and a prohibition against free market trade in organs seems to me to be one of the best possible examples of a situation justifying society acting to prevent unacceptable behavior autonomous.
That being said, there are practical limitations with current rigid implementation of the prohibition against “financial incentives.” I believe that there is significant room for improvement with our current system of handling hospital charges for donors or prospective donors. Theoretically, there is a clear bright line separating care that the OPO can pay for and care that the OPO cannot pay for.
Once there is a legal declaration of death and consent for donation, the patient is now a donor and the OPO assumes financial responsibility for subsequent charges. If the OPO were to assume financial responsibility prior to the point that the patient has become a consented donor, this can be interpreted as being a “financial inducement” and therefore prohibited. Down in the trenches, however, the bright line starts to look a bit dull and fuzzy.
It is common for the health care team to conclude that a patient has sustained a non survivable neurologic insult and yet not meet usual criteria for declaration of brain death due to the presence of confounding clinical factors that may make bedside diagnosis of brain death impossible. In these cases, the use of “confirmatory tests” such as measurements of brain vascular perfusion (radionuclide blood flow scans, angiograms, transcranial Doppler) or measures of CNS function (EEG, brain stem evoked potentials) may be necessary to accurately establish the diagnosis of brain death. While it may be argued that the diagnosis of brain death is an important aspect of the clinical care of the patient, from a practical point of view, if there is agreement between the health care team and the surrogates that the patient would not have wanted continued life support, definitive diagnosis of brain death is not necessary to allow withdrawal of support. The cost of the specific brain death testing and the cost of the ICU resources expended during the process of establishing brain death currently cannot be borne by the OPO even if the only reason to incur that cost was to establish brain death for a patient where caregivers and surrogates had already decided upon a withdrawal of life support.
It can be argued that such patients could be accepted as DCD (Donation after Cardiac Death) donors, and then the OPO could complete the additional testing to establish Brain Death, but I would be surprised if most OPOs routinely handle such cases in that manner. The obvious implication of the OPO’s inability to pay for these charges is that “someone else” must do so. It strikes me that there may be an ethical problem of incurring costs for the sole purpose of establishing eligibility to become a donor and then passing that cost on to a payer that is unaware of that fact that the additional cost was not required for medical care of the patient but to establish suitability as a donor. These concerns lead me to favor at least a modest liberalization of the current restrictions to allow OPOs to assume financial responsibility for diagnostic and therapeutic interventions for prospective donors which were performed after a decision has been made to withdraw life support. A pilot implementation to assess for unintended consequences and to watch for the development of a “slippery slope” seems to make sense to me.
The other rationale in favor of allowing pilot evaluations of regulated, limited financial incentives lies in the 1993 position of the UNOS Ethics Committee conclusion that "only if and when financial incentives for organ donation are widely accepted as different from purchasing of organs, can this alternative be proposed as preferable to the current system of altruistic organ donation." The statement does not state that “under no circumstances should financial incentives be implemented”. It seems implicit in the wording of the statement that some provisions should be allowed to gather data about the effect of financial incentives on the donor process. It is hard to imagine how there could be “widespread acceptance of financial incentives being different from purchasing organs” without some sort of mechanism to gain experience with incentives. As long as the pilot studies provide limited, modest incentives and carefully consider issues of justice (differential influence of financial incentives on various demographic groups) and issues of the effect of incentives on public attitudes, then I do not believe that exploration of incentives will necessarily be unwise.
I am tempted to respond to "kolekona", but after reading thoroughly the DNL website, I have little hope of real dialogue via civil discourse--the sort where one argues both thoughtfully and passionately, but always with respect for the opinions of others, and holding out the possibility that either one (or both) of us might be mistaken in our opinion.
What is illustrated in this blog exchange is how much passion there is around the many moral dimensions of donation and transplantation. Indeed, it is literally about 'life and death' matters, the stuff of passion, of deep feelings. The challenge then, as always in ethical discourse, is to move from pathos to empathy, from the heart (or 'gut') to the mind, from feeling to thinking, from shouting to listening, from hearing to understanding.
I find Myra's and Dr Fracica's comments to be very thoughtful (and civil) on a matter much debated with varying views by those in bioethics and elsewhere. In most cases, it is not a matter of differing values regarding transplantation--that seems to be an assumed good end. Where some of us differ mostly is on the most fitting means to that end of helping improve and extend, even 'save', the lives of those who suffer end-stage organ diseases or who die waiting for available donor organs. Will financial incentives serve that end or actually hinder it?
Dr Fracica raises an especially interesting point regarding current restrictions on OPOs relative to costs of ascertaining brain death and maintaining organ viability prior to declaration of death but after donation intent has been assured. Amelioration of that financial glitch in the system would hardly constitute "incentives" but might make for a more fair and transparent process.
Other similar glitches surely exist, and perhaps some true incentives might be piloted with minimal risk either of violating public trust or the NOTA intent. My sense here is that a good deal more ethics conversation will be required--of the sort that I've described above, with less heat potentially generating more light.
The Donate-For-Life Organ Donor Program is the pragmatic approach as opposed to the ethical approach. One addresses the problem of severe organ shortages and the other 'pretends' to address the problem.
Website: http://www.donate-for-life.com
If you're on the outside looking in; i.e., you need an organ or you will die, rather than being on the inside and looking out thru rose-colored glasses, you perceive the issue from a radically different perspective. It's extremely difficult to step into that other person's shoes -- so, until you've been there, the pragmatic vs ethical debate is moot.
Terry states after reading thoroughly the DNL website (DFL website) she has little hope of a dialog. Our argument in favor of incentives is very pragmatic because as far as we can tell, it will be successful - 100,000 lives will be saved within 48-months of startup. Additionally, the domestic and international black market in organ sales ends. Taxpayers save in excess of $4,585,000,000 in the first year. Transplants are free. Blood banks reach sustained capacity. The armed forces, police, doctors, teachers and others are rewarded too. The nation becomes proactively healthy. It is a win-win-win scenario; it is lawful without harming anyone in third-world countries.
The 51-page white paper and 3-powerpoint presentations are now undergoing an actuarial science analysis and being thoroughly reviewed by a Fortune 100 insurance corporation, prior to transfer to them for startup. Three months in active review and counting; not something a $60-billion corporation does without serious consideration.
In my opinion I'll take pragmatic over ethical any time. We believe most transplant candidates will opt-in for an organ rather than opt-out for the ethical reason, and therefore simply die.
I am agree with you, it is one of the most interesting debates, I have some information about the technology, I am not sure if it is correct!
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