Ethical Challenges Posed by the Solicitation of Deceased and Living Organ Donors

[okarol]

My comment: I don't understand why Dr. Hanto is the primary "expert" that the media goes to whenever there's a story about living donors. Here's a recent paper he wrote.
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Ethical Challenges Posed by the Solicitation of Deceased and Living Organ Donors

Douglas W. Hanto, M.D., Ph.D.
March 8, 2007
The New England Journal of Medicine

Given the shortage of transplantable organs, some potential recipients are going to great lengths to find organ donors on their own. For example, a patient with advanced liver cancer advertised on a personal Web site, billboards, and in the media for a liver leading the family of a brain-dead donor to direct the donor's liver to him.
A patient undergoing dialysis solicited on a commercial Web site and received a kidney from a volunteer living donor. 
The solicitation for organs from deceased and living donors potentially circumvents the principles of justice and utility on which organ-allocation policies are based and has sparked a vigorous public debate.
In this article, I review the medical, ethical, and public policy issues involved in solicitation and offer possible solutions.

Solicitation of Families of Deceased Donors
In the United States, organs from deceased donors are allocated in a nondirected fashion (see the Glossary) to patients on a waiting list according to the policies established by the United Network for Organ Sharing (UNOS).
Exceptions have occurred when a family member or friend of a deceased donor is on the waiting list and the organ or organs are directed to that person. These exceptions are permitted by the final rule governing the Organ Procurement and Transplantation Network (OPTN) and by the Uniform Anatomical Gift Act, which was revised in 1987.
The transplantation community has interpreted the final rule as permitting the directed donation of organs from deceased donors to family members or friends but not under other circumstances.
Another exception occurs when a donor's family has responded to a public plea by a potential recipient and directs the donor's organ or organs to that recipient. The solicitation of the families of deceased donors by recipients or their representatives results in a directed donation that allows recipients to "jump the list" and is viewed by most in the transplantation field as violating the fair principles of organ allocation.

Solicitation of Living Donors
No national organization or allocation policies regulate living organ donation. Living donations historically have all been directed between family members and friends, are considered ethically acceptable, and are performed according to policies established at individual transplantation centers.
Volunteer living donors ("good Samaritan" donors) who present themselves to a transplantation center generally become anonymous nondirected donors to the next compatible patient on the waiting list at the given transplantation center; this method is generally considered to be the most fair.

However, good Samaritan donors are rare (there were 85 such donors in 2004 and 79 in 2005 in the United  States). The solicitation of a living donor for a specific recipient does not violate any existing national policies as long as there is no payment for the organ, but this form of donation is currently unregulated. Because the solicitation of living donors may involve unethical or even illegal practices, the Health Resources and Services Administration has directed UNOS to develop guidelines for the allocation of organs from living donors.

Arguments for and against Solicitation
Donor Autonomy 
In order for solicitation to work for the recipient of an organ from either a deceased or living donor, the donor or his or her family must be allowed to direct the donation. It has been argued that the donor who is voluntarily giving a kidney should be able to direct this gift to anyone he or she chooses

Not everyone agrees. In order for the donor to donate, not just the recipient, but also others such as a transplantation surgeon, nurses, and a hospital must be involved, and the ethical, legal, and social obligations of these other parties must be considered.
Furthermore, justice and utility demand a balance between the donor, who claims autonomy, and the rights of all patients on the waiting list. If a donor's choice interferes with justice and utility, it should neither be considered a fair application of autonomy nor be allowed.
UNOS bars directed donation to groups on the basis of race, sex, religion, national origin, or similar characteristics.
Others view kidney as a private resource that can be donated to anyone of the donor's choosing, even if the donation is discriminatory, and they believe that the graft becomes the property of the designated recipient.
The argument that living kidney donors want to be able to direct their donation and would be less likely to donate if this right were taken away is not supported by the experience at the University of 
Minnesota, which requires that kidneys from good Samaritan donors go to the patient who is first on their center's UNOS waiting list.
A national conference report on nondirected living kidney donation provided support for a policy of nondirected donation tithe list.
On the basis of the results of a survey of adults in the United States about whether donors should be able to choose their recipients,
Spital reported that 93% of the respondents who were willing to donate a kidney to a stranger said they would still donate if they could not direct their donation. Spital concluded that permitting directed, living kidney donation would result in a very small increase in the number of people willing to donate to a stranger, whereas not allowing it would not substantially decrease the number of donors.
What happens when a good Samaritan donor or the family of a deceased donor says "directed donation or no donation"? Many people believe that accepting directed donation in this circumstance abandons the principles of equity and justice.
For example, a liver from a deceased donor might be directed to a patient waiting at home, whereas a critically ill patient in an intensive care unit in the same hospital where the donor died might die while waiting for an organ. If we accept directed donation in this circumstance, it is likely that we would also have to accept discriminatory directed donations from living donors and deceased donors.
Is the Allocation System Fair?
Claims that the current allocation system is not fair to all patients on the waiting list have been used to justify seeking an organ or organ donor outside the current system. UNOS is required by the Health Resources and Services Administration to allocate organs from deceased donors in a nondirected way that balances the principles of justice, equity, and utility. Broadly representative committees are involved in developing, soliciting public comment on, approving, and reviewing allocation policies that are updated as inequalities are identified.  All policies are subject to public and governmental accountability and oversight. UNOS allocates organs from deceased donors in a nondirected fashion that appears to be the most fair to all recipients on the waiting list and is arguably a model that could be applied with some modifications to living-donor transplantation.

Does Solicitation Increase Public Awareness and Organ
Donation?
Media publicity regarding solicitation has increased public awareness of the organ-donor shortage and the suffering of patients.
Anecdotal information suggests that some donors have come forward and indicated they would not have thought to do so except for the personal stories reported by the media.
Publicity and personal stories are misleading, however, because they suggest unique recipient needs. Directed donation that is based on an emotional appeal assumes that the recipient is for some reason exempt from the criteria that apply to all patients waiting for an organ.
All patients on the waiting list have personal stories of suffering that, if told, could be powerful and motivating.

Does Solicitation Bypass Fair-Allocation Policies?
The solicitation of organs from deceased donors bypasses the patient who is first on the waiting list; therefore, it violates the principles of utility and justice on which allocation policies are based. The trust in and fairness of the system will be undermined if the policies that have been agreed to are violated by the directed donation of organs from deceased donors to recipients other than the person at the top of the waiting list; a decrease in organ donation could result. Recall the public outcry when it was believed (incorrectly) that Mickey Mantle, a baseball player who received a liver transplant, had "jumped the list" and received a liver before others on the list because of his fame. 
Should exceptions be allowed? The American Society of
Transplant Surgeons has declared its support for directed donation from a deceased person to family members, friends, or persons with a preexisting community-based relationship to the donor. Some have argued that organ-procurement organizations are not detective agencies and that directed donation of organs from deceased donors should be permitted only for first-degree relatives; after that, the organ from a deceased donor should go to a person on the waiting list. However, many friends have strong emotional bonds and feel a greater obligation to help a friend who needs an organ than do some family members.
Donors in this situation should not be excluded from sharing their gift. 
Transplantation centers and organ-procurement organizations currently permit directed donations from friends when there is confidence of a preexisting emotional relationship. Believe this practice should continue.

Potentially Discriminatory Practices
A potential donor or a donor's family may choose a person on a Web site or billboard on the basis of criteria that are discriminatory; there is no way to prevent this from happening. Most believe this practice is unethical and should not be permitted.
For example, the family members of a murdered Ku Klux Klan sympathizer agreed to donate his organs only if they were transplanted into white recipients. Their decision led the Florida legislature to ban directed donation to persons belonging to specific groups
The current organ-allocation system must be protected from discriminatory practices that could place certain classes of people at a disadvantage. 

Does Directed Donation Favor Advantaged Persons?
Well-educated patients and those with public relations skills and financial resources arguably have easier access to the media and Internet than patients with fewer advantages.  Thus, their stories, pictures, and demographic characteristics may be favored by potential living donors and the families of deceased donors.
For example, many people volunteered to donate an organ to a well-known professional basketball player.
In addition, there has been little proactive effort to make Web sites about solicitation available to all recipients on the waiting list. Recipients need to know about these Web sites, decide if they want to participate, and then must have the resources to write a story, pay fees, and screen donors who come forward. A patient's access to the Internet, particularly broadband services, varies according to location (e.g., access may be less available in rural communities) and to his or her age and socioeconomic class.
Furthermore, because the Organ Donation and Recovery Improvement Act permits the recipient to reimburse the donor for travel and subsistence, recipients with the ability to pay would be more likely to complete the transaction successfully with a solicited living donor. 
If solicitation becomes acceptable and common, patients might elect to solicit a living-donor stranger rather than approach a family member.
Besides the ethical concerns about soliciting strangers to take risks that a patient is not willing to ask of a family member, soliciting donors could lead to a net decrease in the number of living organ donors because fewer family members might be approached.

Risk of Exploitation and the Buying and Selling of Organs
Solicitation may result in the exploitation of vulnerable populations such as the poor, psychologically unstable, and mentally impaired. One would hope that the psychosocial evaluation of potential donors by each transplantation center would uncover such instances, but this may not always be possible.
Furthermore, illegal demands for payment at the time of solicitation have already been made by prospective living donors.
The potential for illegal transactions as a result of solicitation puts transplantation physicians and centers at risk for unknowingly participating in the buying and selling of organs. It is more likely that recipients who have substantial financial resources and are willing to risk violating the law will be able to buy a donor organ. Some have proposed that the donor and recipient should sign an affidavit certifying that no reward has been paid for the organ, but such an affidavit will not prevent these transactions. Although there may be exchanges of goods or favors between living related donors and recipients or between those with preexisting relationships, it appears more likely that the motives of families and friends will be purely altruistic. In contrast, the motives of strangers are apt to be much more complex. Unfortunately, no data have been obtained to directly address this issue.
Finally, years after the donation, a living donor could have a financial or other need and could contact the recipient with a request for assistance, placing the recipient and his or her family at risk of violating current laws that prohibit the buying and selling of organs. In many nondirected, living-donation programs, the donor and recipient are anonymous unless both wish to meet.
This anonymity protects the donor from an unwanted relationship with the recipient, maintains the true altruism of the donation, and frees the recipient from any further obligation to the donor. Many believe this should be the preferred arrangement for such donations.

Does Solicitation Divert Organs to Unsuitable Candidates for
Transplantation? 
Solicitation by potential recipients who may not be appropriate candidates for transplantation may occur.  For example, the young man with liver cancer described previously did not meet the added priority criteria for hepatocellular carcinoma because his disease was far advanced, and he was low on the waiting list. He received a liver outside of the normal allocation system but died of recurrent tumor less than 1 year after transplantation. Was that a fair or efficient use of a scarce resource? What happened to the patient on the waiting list who would have received that liver had the normal allocation policy been followed?

Conclusions 
The solicitation of families of deceased donors by recipients or their agents to direct the donation to a recipient other than the person at the top of the waiting list should not be permitted. Solicitation of living donors and the directed donation that results may involve unethical and illegal practices that place recipients and donors at risk and should be rejected by the transplantation community. A nondirected donation from a deceased or living donor to the first patient on the waiting list is permissible and preferable and is unlikely to discourage donation. UNOS is best positioned to and should regulate living organ donation and allocation, and it should apply the same principles used for nondirected, deceased-donor organ allocation. The directed donation of organs from deceased and living donors to family members and persons with a preexisting emotional relationship should be permitted.
A clear policy that defines the preexisting emotional relationships that are acceptable must be developed, and the final rule, which technically permits any directed donation of deceased-donor organs to a named person, should be amended to be consistent with this policy. 
Glossary 
Directed donation: An organ or organs donated to a specific named person.
This donation can be from a living donor, from a deceased donor (by means of an advance directive), or from the family of a deceased donor to a family member, friend, or stranger as a result of solicitation.
Nondirected donation: An organ or organs donated to patients on the transplantation waiting list. A nondirected donation does not name a specific recipient. It can be from a good Samaritan living donor, from a donor who has signed an organ-donor card* or an advance directive, or from the family of a deceased donor. The organ or organs are allocated by UNOS according to established policies. 
Solicit: To make a petition to, to approach with a request or plea, to strongly urge, to entice, or to seek to obtain by persuasion, entreaty, or formal application. 
Public solicitation: Pleas for an organ or organ donor by potential recipients or their agents on Web sites, billboards, television or radio, or other forms of advertising. Public solicitation can involve deceased donors or living donors and, if successful, always results in a directed donation. If the donation is from a deceased person, the intent is to bypass the usual allocation processes.

*Organ-donor cards are now legally binding because of "first-person consent" laws passed in several states that prevent families from overriding a person’s decision to be an organ donor.

No potential conflict of interest relevant to this article was reported.

Source Information
From the Division of Transplantation, Department of
Surgery, Beth Israel
Deaconess Medical Center, Harvard Medical School, Boston.
Address reprint requests to Dr. Hanto at 110 Francis St.,
7th Fl., Boston,
MA 01742, or at _dhanto@bidmc.harvard.edu_
(mailto:dhanto@bidmc.harvard.edu)
.
 

[jbeany]

Oh, puhlease.  This idiot better hope neither he nor someone he loves ever gets sick!

"On the basis of the results of a survey of adults in the United States about whether donors should be able to choose their recipients,
Spital reported that 93% of the respondents who were willing to donate a kidney to a stranger said they would still donate if they could not direct their donation. Spital concluded that permitting directed, living kidney donation would result in a very small increase in the number of people willing to donate to a stranger, whereas not allowing it would not substantially decrease the number of donors."

Right, ask someone at random if they will donate a kidney, and if they would do it for a stanger.  Don't tell them any real information about what it takes, the risks involved, the financial burdens, etc.  Might as well just word the question "Do you consider yourself to be an altruistic person?"  Of course they are going to answer yes - who is going to answer no?  It's not like someone is going to drag them to the hospital the next day and yank one out.

And why interview a random group of adults for this answer?  Why didn't he interview donors who have already gone thru this.  Did he consider asking them if they would still have done it if they didn't get to direct the donation?  Wouldn't that give a more realistic answer to the question?

I don't look at living non-related donors as "jumping the list".  I see them as someone who managed to get off the list, and get out of the way of the people behind them.

[okarol]

I agree. The following is from my friend Tom, an altruistic living donor:

Dr. Hanto has been very outspoken in his opposition to donors (either deceased or living) to have any say in who gets the organ. I know for a fact there are other surgeons,  ethicists, and transplant professionals who have opposing positions, but my concern is that Dr. Hanto 'gets all the press' so the public gets the impression that everyone has the same opinion as he does.  I respect Dr. Hanto's position, but I'd like the world to know that he is NOT a donor himself.  Until he steps to the plate and donates an organ, he has no right to bar others from acting.

Look at Jenna's case for example.  If you believe Dr. Hanto's position, Patrice should have 'donated to the next person in line' regardless of who that person is.  His assumption is (in my opinion) Patrice WOULD HAVE donated to 'whoever' without having any say in who got the kidney.  It is POSSIBLE she would have -- but how LIKELY is it?   Patrice may have been willing to donate to Jenna -- or NO ONE.  So if you belive Dr. Hanto's opinion, Patrice disadvantaged the next person in line.  I don't agree.  In my humble opinion, Patrice disadvantaged NO ONE.  She donated a kidney to someone and it is not fair to question her motive for doing so.

For the record, I have no objection to how hard you worked to get your daughter a kidney.  You helped her and the publicity generated only helps others.  Who is hurt?  I can't think of anyone. 

I guess looking at it from Dr. Hanto's view though (assuming he is a transplant surgeon).  He can perform 2-3 transplants a day and still make it home for dinner.  So if an occasional kidney goes to a 'non-kidney worthy' individual, no big deal.  Contrast that to the donor's view.  Patrice has one opportunity to donate, and then she is done.  If her kidney goes to an 86 year-old, diabetic, alcoholic prisoner who may not take care of the gift, how good will she feel about her gift? 

[okarol]

I had posted this article along with my question that the press always refers to Dr. Hanto whenever the subject of donors comes up.  Dr. Hanto's response is here:

Douglas Hanto - 03-Apr-07, 08:11 AM (EDT): I am asked to comment on ethical issues related to transplantation for probably several reasons. I don't seek out the press, but I do think it is important that these issues are discussed in public forums and so I do participate. I have had a longstanding interest in the ethics of medicine in general and transplant in particular.I was Chair of the Ethics Committee of the American Society of Transplant Surgeons, am finishing a term on the UNOS Ethics Committee, and am a member of the Transplantation Society (International)Ethics Committee. I do write and speak on ethical topics as in the NEJM article. I would like to think that I am asked to comment because I try to look at all sides of the issues and give all arguments, pro and con, fair treatment. In some areas I have strong opinions (opinions that are based on logic and available data) about what I believe is ethical and fair and I express them. I don't expect everyone to agree. That is one of the great things about freedom of expression. There are gray areas and I try to point them out as well. Before you dismiss my arguments in the NEJM article consider them carefully. I truly believe that we must remain true to basic ethical principles during this time of organ shortages because they are not going to go away in the short term. I think the best solution is more efforts at making xenografting (transplants from pigs for example) work. But that's a whole different topic.

[nextnoel]

I think the best solution is more efforts at making xenografting (transplants from pigs for example) work. But that's a whole different topic.[/b]

Or maybe we could graft from Dr. Hanto himself - he's an ass!

[Sluff]

God forbid Dr Hantos ever needs an organ, because he just might recieve one from a farm animal.

[kitkatz]

He sounds like a jack-ass!