EU countries begin arduous task of creating uniform policies, ethical platform for transplantation.
Instead of realizing the many benefits life saving and life enhancing transplants can provide, the transplant system in Europe has seen no real progress in the past 20 years and may have declined, Jan Busschbach, of the Dutch Transplant Foundation, told participants attending an international congress convened to lay the groundwork for creating a uniform ethical platform for transplantation in the EU.
"We need new uniform policies to be able to include all the new countries that have become member states," Busschbach explained. "All EU countries have a different set of laws governing transplantation and we are here to initiate a platform that will lead towards developing a common European policy."
"Ever since transplantation started there has been a scarcity of organs even though it has been contested by medical progress," he added. "
More than 200 transplant professionals from around the world attended the three day meeting in Rotterdam, The Netherlands to debate and discuss a diverse set of issues including the increasing commercialism and trafficking of human organs, legal issues, the role of the media, and the increasing use of live donors. The congress was entitled Organ Transplantation: Ethical, Legal and Psychological Aspects.
"The purpose of the conference is to encourage the exchange of information, ideas and experience and to establish a permanent European Platform on these issues to formulate guidelines and stimulate joint research efforts," Willem Weimar, chair of the organizing committee, told participants.
Weimar noted that the last time ethical issues were discussed in Europe took place in Munich in 2002 and since that time new transplant programs have been developed "with new technologies and logistic solutions, especially in the field of living donations."
"These programs generated a number of new questions about the ethical, legal and psychological implications of these developments," Weimer added. At the same time the European Union was rapidly expanding which "created both new opportunities for cooperation and problems to solve such as access to care.
Michael Bos, of the Netherlands Health Council, said there are about 65,000 Europeans waiting for kidney transplants (compared to 95,000 in the US) which has fueled an increase in both living donors and highlighted a disparity that exists in donor rates per country.
Bos provided a snapshot of some of the trends in the EU:
*Several of the recent new members of the EUEstonia, Czech Republic, Latviahave higher living donor rates than the older EU members.
*Deceased donation is stable or decreasing in most countries with the exception of Spain, Estonia, Belgium and Austria.
*Only The Netherlands and Romania allow kidney living donor swaps.
*Donation After Cardiac Death (DCD) is growing very slowly. Only the Netherlands, Latvia, Spain, and the UK allow DCD. Germany still strictly forbids it.
*Organ trafficking has increased and it is estimated 10,000 kidneys are involved a year.
The European Platform
The platform to be developed has the following aims, according to the organizing committee:
(1) Bring permanency and structure and dialogue on the complex issues of organ transplantation ethics. The Platform will be helpful in mapping and bringing together European expertise on the various legal, ethical and psychological aspects of organ transplantation. To ensure permanency, one of the key tasks is to begin organizing the next conference on ethical, legal and psychological aspects of transplantation.
(2) Solve complex discrepancies between European countries, and to formulate European guidelines on ethical, legal and psychological aspects of transplantation. During each conference workshop, the audience will be asked to prioritize issues in need of further attention.
(3) Inform researchers, policy makers and the general public about new developments in the field of organ transplantation.
Participants at the Rotterdam meeting developed a list of recommendations and priorities for the following topics - 1. Commercialization and trafficking; 2. Legal systems for organ donation and allocation; 3. Altruism, counseling and psychological aspects of living donation; 4. Minorities, religion and gender aspects; 5. Expanded post mortem criteria including Non Heart Beating (NHB) donation; and 6. Role of the patient, media and pharmaceutical industry.
The Platform Web site contains a complete list of the recommendations from the Rotterdam meeting and other information. The Web site is: www.elpat.eu.
Here is a list of some of the recommendations and priorities adopted by the participants in each workshop.
Workshop 1: Commercialization and Trafficking
(Trafficking in human beings' shall mean the recruitment, transportation, transfer, harboring or receipt of persons, by means of the threat or use of force or other forms of coercion, or abduction, of fraud, or deception, of the abuse of power or of a position of vulnerability or of the giving of payments or benefits to achieve the consent of a person having control over another person for the purpose of exploitation. Exploitation shall includethe removal of organs (Article 4, Council of Europe Convention on Action against Trafficking in Human Beings)
*This congress condemns without reservation any practice that subverts or violates a potential donor's human rights or that involves coercion or deception.
1. The transplantation of organs and tissues from executed prisoners should be universally banned by law.
2. The practice of organ and tissue trafficking should be universally banned.
3. Every effort should be made to discourage potential recipients from seeking trafficked organs and tissues.
4. Health care professionals should be banned by law from facilitating organ and tissue trafficking (i.e., referring a patient to a foreign transplant service known to be involved in trafficking).
5. Governments should be encouraged to carry out necessary surveys to quantify organ and tissue trafficking.
Workshop 2: Legal Systems for Organ Donation and Allocation
Recommendations of issues that should receive further consideration:
1. Greater consensus and clarity regarding the locus of control in respect of transplantable organs.
2. The relationship between living and deceased systems of organ donation and allocation.
3. The extent of permissible direction' of organs and the moral power of reciprocity.
4. How we should factor benefit' in the renal allocation formula.
Workshop 3: Altruism, Counseling, and Psychological Aspects of Living Donation
Recommendations for Immediate Research Priorities
1. Development of a uniform protocol for the screening and full-scale psychosocial evaluation of both living related and living nonrelated donors.
2. Development of protocols for the systematic psychosocial follow-up of post-donation outcomes.
3. Research to improve the content of risk information given to donors; research on how to best communicate risk information.
Recommendations for Longer-Term Research Priorities
1. Research to identify what constitutes a negative' psychosocial outcome and what level of donor psychosocial follow-up is routinely needed.
2. Research to develop better strategies to identify living donors, including what role/responsibility healthcare professionals have in this process.
3. Research to better understand the motives of nonrelated donors and the impact of motivation on ultimate post-donation outcomes/
4. Research to better understand why some prospective living donors decline or drop out' of the process before donating.
Workshop 4: Minorities, Religious and Gender - Recognizing and Respecting Diversity
Workshop Discussion and Priorities
1. Inequalities in rates of organ donation and transplantation exist among diverse groupse.g. ethnicity/social class/gender/religionhow do we achieve a better understanding of this?
2. How do we make the gifting of organs' relevant and meaningful to a multi-ethnic and multi-faith society?
3. We cannot assume that all communitiesethnicity/gender/social class/religion have the same opportunity to become organ donors.
4. Should we engage the public with discourse of disease prevention' as well as organ donation.'?
5. How do we engage local religious stakeholders' with religious opinion?
6. How do we encourage local religious stakeholders' to engage with their community?
7. Involve theologians in debates concerning theology and organ donation.
8. How do we separate out religious' concerns from cultural concerns'?
9. Recognize and respect the fact that there are a range of cultural norms' among both the diverse society of the public and professionals.
Workshop 5: Expanded Post Mortem Donor Criteria, including Non-Heart Beating Donation
1. Patients must be informed of the general risks of organs at the time of waiting list registration.
2. Patients must be kept informed whilst on the waiting list.
3. Specific risks associated with an offered organ must be discussed before transplantation.
4. The distinction between Standard Criteria Donors (SCD) and Extended Criteria Donors (ECD) should be considered a continuum.
5. Steps must be taken to avoid the potential that increasing non-heart-beating donation may reduce brain death donors.
6. More formal representative links should be established between IC organizations and donation organizations/
7. Adequate resources to support donation and retrieval are essential.
8. Alternative options that preferentially allocate old kidneys to old patients and vice versa should be investigated.
9. A focuses meeting on national and international allocation systems should take place.
Workshop 6: Role of Patients, Media and Pharmaceutical Industry
1. Non-adherence to medication is a major problem in organ transplantation.
2. The effectiveness of psychosocial interventions before and after transplantation to prevent non-adherence is unproven.
3. It is essential that Rats are initiated to investigate the efficacy of interventions in this area.
1. Health care professionals have a duty to ensure that all aspects of transplantation, including organ donation, are portrayed in a realistic way in the media.
2. The media have a duty to ensure that they realistically portray all aspects of transplantation.
Major New Advances
1. There should be a National Ethics Committee, in addition to local ethical committees, to advice on major new advances in medicine, e.g. face transplantation.
2. Major ethical issues should also be reviewed by the European Ethics Group.
1. There should be a European initiative to establish public-private professional partnerships for the development of drugs and other interventions in transplantation that do not have obvious market potential.
2. A good example is the innovative medicines initiative in the EU.
3. Health care professionals must be transparent with respect to their relationship with industry, and this information should be easily available to their patients.
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|Date:||May 1, 2007|
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