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CIAO DATE: 10/00

Euthanasia and Human Rights Law: Compatible or Contradictory?

Art Blaser

International Studies Association
41st Annual Convention
Los Angeles, CA
March 14-18, 2000


Ending life is a topic generally addressed by avoidance. This tends to be the case individually and globally. Although I’d argue that the harm in this is usually although not always minimal at the individual level, this is not the case at the global level. In between are efforts at the national level, which generally reflect an uneasy compromise between multiple attempts to create policies ensuring universal human rights or trampling upon them.

As with many topics that are not frequently addressed, commentary is more notable for its absence than its presence. There are exceptions, however, such as in the question and answer posed by one analyst: "Would permitting assisted suicide really vindicate the right of private decision making when essential safeguards against abuse of the practice would include complex procedures that often could involve officials and other strangers in intimate end-of-life decisions? Even though the international controversy over assisted suicide has recently intensified, this important issue has been strangely absent from the discussion. ..." (Underwood, 641).

The absence is also reflected in texts on international relations, ethics, and law. A recent ethics text, for example, offers wonderful insights into issues such as nuclear deterrence, the Peloponnesian War, famine relief, caning, genocide, global warming, and immigration, but does not mention assisted suicide or euthanasia (Amstutz).

This paper is a preliminary attempt to identify some key questions in end of life controversies. It is exploratory, having changed many times during the writing process, and I expect will change many more times. I begin by identifying distinctions and providing historical background to debates over ending life. I then examine key elements of the debate in different countries. I then identify regional and global human rights standards and indicate how they could be applied to the issue. I examine how the issue has been grappled with or ignored by regional and global bodies, governmental and nongovernmental. And finally I argue for the importance of addressing end-of-life issues, but only in combination with attention to whom it is that does the addressing.

In arguing that there is a gap in analyses of rights I suggest 5 explanations:

First is a desire to avoid discussion of death. I'd suggest that this explains much of both the hesitance of the academic community and diplomatic community to address such issues. The passion with which many partisans address these issues has contributed to this reluctance.

Second is a desire of countries which have policies aimed at ending life to emphasize human rights concerns in other countries. If human rights are a problem for countries in which they are endangered but not for others it is tempting to ignore issues at home to focus on those abroad. One factor in this is shared culpability. One of the unsuccessful defenses at the Nuremberg trials was that the victorious powers had also sterilized members of their populations.

Third is a mistaken belief in medical progress without consequences. Heavily publicized campaigns on actual and hoped for "medical miracles" obscure the reality that people are living longer, with disabilities, than ever before. Disabilities such as riverblindness may become less common, but others including Alzheimer’s are becoming more common.

Fourth is a belief in some forms of relativism. There is a desire to focus on matters on which there is agreement, and the passionate arguments about ending life may tempt an agreement to agree to disagree.

And fifth is the desire to focus on areas where there is wide consensus. Especially where genociders or torturers have been defeated it is a much easier matter to discuss the ending of life.


I. Ending Life: Distinctions and Historical Background.

Attempts to address issues of active or passive euthanasia, physician induced or assisted death or suicide, and many related ones will often tell us more about the speaker or writer than about the issues. And invariably the question of whether abortion and infanticide are included arises. Although I’d argue that such discussions are important, to engage in one is not the intent of this paper.

Certainly the frequent decisions to withdraw life support differ from government campaigns to euthanize "undesirables," but human rights standards obscure human rights issues related to the ending of life if they do not ignore them.

Often death comes about naturally, but in every case nature is hastened or forestalled both by the actions of the individual who dies and by others. Although individuals will persist in labeling acts of death as "voluntary," "passive," "induced," or "palliative," often the use of such descriptors will tell us more about the attempted "spin" of the speaker or writer than about the death process.

I don’t make a claim that this analysis is somehow neutral or without "spin." Indeed not only do I not believe that there are workable safeguards for efforts to end life, I don’t believe that such efforts are possible. But much of my information on international law and ending life comes from advocates of such practices and I expect to further revise this analysis based upon the arguments of these advocates.

One distinction I’d argue is especially important; that between ending life as a general question and ending life as it applies to subgroups within the general population. I’d argue that this points to a problem for which there are not workable safeguards, and attention focused on addressing inequalities between subgroups is harmfully diverted by efforts aimed at ending life. Even relatively wealthy countries have failed to include people with disabilities (PWDs) and they are virtually always the targets of efforts to end life. The descriptor "voluntary" is often questionable because life ending decisions take place in a social and economic context.

Other distinctions are not particularly relevant to the concerns of this paper. The involvement of the individual who dies, and of others who prevent, facilitate, or induce death will vary, as will the age of termination, whether of someone who has lived for decades, years, or minutes. Fetuses are also terminated, and although some of the ideas in this paper have been, can be, and will be applied to such distinctions, I do not attempt to do this.

The main contemporary example of ending life is that of Nazi Germany. In addition to the millions who were killed in Nazi death camps 250,000 people with disabilities were killed: they were labeled "useless eaters" and their lives were said to be "not worth living," This killing drew effective opposition from the Catholic Church and eventually curtailed: unlike the Jews who were killed those killed by the Nazis euthanasia program might be Catholics.

Opinions are sharply divided as to the importance of understanding the Nazi euthanasia program for understanding either Nazism or current and proposed euthanasia practices.

One view is expressed by Daniel Goldhagen who after stating the Nazi "rationale" offered his assessment, "The congenitally infirm and insane imperiled the health of the nation in two ways: by their potential for passing on their maladies to new generations through propagation and, second, by consuming food and other resources. But this ws child's play compared to the putative threat of the Jews, who-unlike the 'Euthanasia' program's victims were considered to be willfully malignant, powerful, bent upon and perhaps capable of destroying the German people in toto" (143).

A contrary sentiment was expressed by Simon Wiesenthal: "When, nowadays, I again hear physicians discussing euthanasia, and when they call it 'mercy killing', horror grips me: an academic degree is unfortunately no guarantee against psychopathic or sadistic behavior, as was amply proved by the medical staff of Schloss Hartheim. There, too, it was first of all the 'incurably sick', next mentally disturbed, the mentally retarded, and the very old. Soon anybody with any kind of disability was 'not worthy of life'. (82)


II. Elements of the Debate in Selected Countries.

As suggested before, there has been a general reluctance to deal with ending life, and in some cases this has meant that provinces have assumed responsibility. In some cases, not all, this has stimulated action on a national level. Table 1 presents in summary form policies of various states and their subdivisions on ending life.

Table 1 Policies on Ending Life in Selected Countries

Netherlands: Both euthanasia and assisted suicide are technically illegal, but physicians are not penalized for performing them. About 2% of deaths in the Netherlands are curtailed because of physician assistance and or others' instructions. Mercy killing is technically illegal, but has been decriminalized since 1984. Although Dutch law contains "safeguards" a survey in the Journal of Medical Ethics indicated that these were widely violated.

United States - Varying state laws and practices. Oregon permits physician-assisted suicide and reported 27 cases in 1999. It was widely practiced in Michigan, and Jack Kevorkian was sentenced for violation of State laws. Several state laws restricting assisted suicide have been challenged unsuccessfully in federal courts. Proposed federal legislation would prohibit assisted suicide.

United Kingdom — Euthanasia is prohibited, although individual physicians have acknowledged assisting in hundreds of deaths. Some have been charged with murder with varying results.

Australia — physician assisted suicide is now prohibited nationally. It has been the subject of different policies in different Territories, including legalization in the Northern Territory, until overturned by Parliament.. Illegal euthanasia clinics have been established temporarily.

Switzerland — Over 100 deaths hastened each year. non-physicians are not punished for assistance in suicides, provided that purpose is not enrichment, and person dying conducts final death act.

India — Euthanasia prohibited; lawsuit filed in Kerala asserting individual right to die.

South Africa — proposed legislation would permit active euthanasia, which is currently illegal.

Sources: cited in paper; Vollmar.

A. The Netherlands

The frequency of euthanasia in the Netherlands led US Presidential candidate Steve Forbes to charge: "Holland, for example, now allows doctors to practice euthanasia, and they now routinely kill patients without the patients' permission because they want a hospital bed," (in O’Connor, par. 3)

The magnitude of his exaggeration is open to dispute but the fact that euthanasia is frequently practiced isn’t.

Physicians have taken part in allowing or facilitating death for decades. Once this was subject to case-by-case review by the courts. But not today: "Although the Netherlands has allowed euthanasia and physician-assisted suicide by judicial decision since 1985, the Dutch parliament adopted a law legalizing it in February 1993" (Sigel, 26?)

Even comparison of euthanasia, where a physician designs the means of producing death, with assisted suicide has been made. An editorial in the New England Journal of Medicine suggested the greater efficacy of the former: "Not surprisingly, … complications were more likely with physician-assisted suicide than with euthanasia. Moreover, in 21 of 114 cases in which the original intention was to provide assistance with suicide, the attending physician found it necessary to intervene by administering a lethal drug, usually because things were not going as they should have" (Nuland, par. 5).

The adherence to human rights law in the Netherlands isn't only a matter of consistent practice; it is also enshrined in the Constitution. Article 94 of the Dutch Constitution: provides that "regulations which are in force in the Kingdom of the Netherlands shall not be applied if this application is not in conformity with provisions of treaties or decisions of international organisations which are binding upon everyone."

Defenders of Dutch policy contend that it simply does openly and honestly what is done covertly elsewhere. However, several sources suggest that although there are extensive guidelines, these are often ignored.

B. The United States

In the United States the debate has also largely ignored regional or global human rights standards. Although a number of Constitutional provisions have been invoked, greatest attention has been given to the Tenth and Fourteenth Amendments.

Central to arguments against ending life were claims that PWDs constitute a group entitled to extra protection from the courts. Although many activists believe that this should be the case the courts have not accepted this principle. In her summary of federal disability law Bonnie Poitras points out that whereas ethnic and gender characteristics have been the basis of added protection from the courts PWDs have not been a "suspect or quasi-suspect class." Thus constitutional protections are not distinct from those of society at large, and states may issue regulations based on a "legitimate" interest which need not be "fundamental" (Tucker, 10). Although many PWD advocacy efforts would suggest that recognition as a suspect class would be desirable, paradoxically on this issue it would probably be of greatest help to an individual who was challenging a prohibition of euthanasia or assisted suicide.

Important developments at the federal level have been ably summed up by others:

"In 1997, the international debate over whether or not the terminally ill have a right to physician-assisted suicide erupted with a flurry of high court and legislative actions. On June 26, 1997, the Supreme Court of the United States held that state prohibitions of assisted suicide, even for the terminally ill, did not violate a fundamental liberty interest protected by the Due Process Clause of the Fourteenth Amendment. (citing Washington v. Glucksberg, 117 S. Ct. 2258, 2261 (1997).) Nor did such laws violate the Equal Protection Clause by discriminating against terminally ill persons who were not on life support by denying them doctor aid in hastening death even though similarly ill patients on life support could obtain physician assistance in stopping such treatment.(citing Vacco v. Quill, 117 S. Ct. 2293, 2296 (1997).)  Congress and the President acted earlier in the spring of 1997 to ban the use of federal money to pay for doctor-aided suicide" (Underwood, 641-642).

Although the federal government has passed legislation relevant to euthanasia and assisted suicide, states have identifiably different practices.

Oregon has been at the forefront of legalization efforts initially by statute approved by voters through referendum and then continued through initiative legalized assisted suicide in 1994. Twenty-seven lives were ended in 1999, and that number is expected to increase.

For decades now the State Department Country Reports have served as a measure of human rights observance around the world. They contain a plethora of information on such matters as respect for the integrity of the person, and discrimination based on disability. Assisted suicide and euthanasia policies are not mentioned. For instance we are told in the report on the Netherlands that "there were no reports of political or extrajudicial killings" (Department of State, 1397) and "there is no discrimination against disabled persons in employment, education, or in the provision of public services" (1400).

A measure currently being considered by Congress and passed by the House is the Patient Relief Promotion Act. It would make the practices in Oregon illegal and would ease access to drugs which aid in pain relief.

C. Other Countries

In Australia particular regions have legalized assisted suicide although it has never been the policy of the National Government. For instance, euthanasia was permitted in the Northern Territory until its law was struck down by that country’s Supreme Court. In South Australia voluntary euthanasia bills have been before Parliament since 1994, but none has been adopted.

Briitish policies have tended to emphasize "letting nature take its course" which in some cases will mean death. "In 1993, Great Britain's highest court, the House of Lords, decided Airedale N.H.S. Trust v. Bland, in which it approved the application of hospital officials, acting with the concurrence of the patient's parents, to remove life-support systems from a young man who had been in a persistent vegetative state for three years, ever since he was injured in a soccer game riot. The House of Lords also differentiated between discontinuance of life-support in the best interest of a patient in a persistent vegetative state and euthanasia of terminally ill but competent patients. The vital distinction was between acts and omissions. Glanville Williams characterized the termination of life-support as "in substance not an act but an omission to struggle" which is "not a breach of duty by the doctor, because he is not obliged to continue in a hopeless case." The omission introduced no new harm but merely allowed a "pre-existing condition" to take its natural course towards death" (Underwood, 663).

Other countries in which either legislators or courts have taken action either to permit or decriminalizing the ending of life include South Africa, Switzerland, Canada, and Japan.


III. Regional and Global Standards.

Here we discover a variety of rules that may implicitly address issues of ending life, although not many documents which specifically address it. Just about every human rights document contains a statement about the right to life, but whether it applies to capital punishment or other specific issues is disputed. There also is often protection for individual agency and against a government that would control people's wishes. There is also usually a provision that provides that enjoyment of rights shall be equal for representatives of certain groups. Whether people with disabilities would fit in the residual category "other" is open to dispute.

Human rights documents contain many arguably relevant standards including rights to privacy and to health. But right to life and nondiscrimination provisions are most frequently cited and many of these are listed in Tables 2 and 3.

Table 2: Nondiscrimination Provisions in International Human Rights Documents

  1. United Nations
    1. Universal Declaration of Human Rights, Article 2 "…without distinction of any kind such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status."

    2. Covenant on Civil and Political Rights, Article 2, Section 1 Same as A
  2. African (Banjul) Charter on Human and Peoples’ Rights

  3. Article 2 "without distinction of any kind such as race, ethnic group, color, sex, language, religion, political or any other opinion, national and social origin, fortune, birth or other status."
  4. Inter-American Human Rights Documents
    1. American Convention on Human Rights,

    Article 1 "without any discrimination for reasons of race, color, sex, language, religion, political or other opinion, national or social origin, economic status, birth, or any other social condition."
    IV. [European] Convention for the Protection of Human Rights and Fundamental Freedoms Article 14 "…without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status."
    Source: Supplement to Newman and Weissbrodt Supplement, 1996.


Table 3: Life Protection Provisions in International Human Rights Documents

  1. United Nations
    1. Universal Declaration of Human Rights, Article 3 "life, liberty and the security of person"

    2. Covenant on Civil and Political Rights, Article 6, Section 1 "…the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life."
  2. InterAmerican Human Rights Documents
    1. American Convention on Human Rights, Article 4, Section 1 "Every person has the right to have his life respected. This right shall be protected by law and, in general, from the moment of conception. No one shall be arbitrarily deprived of his life.
    2. American Declaration of the Rights and Duties of Man, Article 1 "Every human being has the right to life, liberty and the security of his person.
  3. [European] Convention for the Protection of Human Rights and Fundamental Freedoms Article 2 "Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty provided by law.

Source: Supplement to Newman and Weissbrodt 1996.


Interpretations of these provisions can and do vary, but I’d suggest that ambiguity is intentional, reflecting the uncertainties and multiple perspectives of the parties to the documents.

  1. The Americas

  2. Very reluctantly the InterAmerican Commission on Human Rights took up the question of a portion in 1981. The opinion in that case, Baby Boy, indicates the many complexities of the abortion question, most of which are also applicable to the issue of ending life. In that opinion, the draft of the Juridical Committee was quoted as extending the right to life of "incurables, imbeciles, and the insane" (In Newman and Weissbrodt, 1996). That opinion also considered a variety of rights including the right to equality without distinction (here according to age but with euthanasia also presumably according to disability), and the right to preservation of health. Nevertheless the Commission determined that abortion did not violate the rights outlined in the American Declaration of the Rights and Duties of Man and that different parties had different understandings of the relevant articles.
  3. Europe

  4. Europe has the most highly institutionalized regional system of human rights protection. Some rights, such as freedom from torture and the right to education have been the subject of extensive discussion. Not so with rights related to ending life.
    But legislation which addresses ending life may involve other rights, such as freedom of information and the right to privacy. This was the basis of a complaint against Great Britain for its Suicide Act of 1961 which was brought before the European Commission of Human Rights. In that case the law was upheld in part because the individual seeking the information would not have used it (Underwood, 648; that case involved ", it concerned the prosecution of an employee of the Voluntary Euthanasia Society (EXIT) who was charged with aiding others to commit suicide by referring them to his co-defendant who allegedly then assisted the would-be suicide in performing the act.")
    In the field of human rights Europe has multiple, overlapping institutions. These include the Organization for Security and Cooperation in Europe, the European Union, and the Council of Europe. So it is not surprising that in this area standards are ambiguous.
    A 1995 resolution of the European Parliament (the legislative body of the European Union) is unusual in its direct reference to euthanasia. Its relevant paragraph said that the Parliament "18. Calls for a ban on euthanasia to the detriment of the disabled, patients in long-term coma, disabled new-born infants and the elderly; calls on the Member States to give priority to setting up units to provide palliative care for the terminally ill so they can die with dignity" (European Union)
    Although the resolution is directly and forcefully written, many of the Parliamentarians are from countries which condone the very practices they condemned.
    European rights legislation continues to evolve. In The Economist's The World in 2000 a big project of the European Union (EU) for 2000 was indicated to be "a charter of fundamental rights for all EU citizens." (Cottrell, 54). If an explicit statement on the end of life were included, certainly many would be outraged by its content, and more would be surprised.
  5. Nongovernmental Organizations

  6. 1. Amnesty International and Human Rights Watch. Both of these organizations have extensive reports on a range of human rights conditions. Especially in the case of Amnesty International, the mandate has called for attention to a subset of human rights. The question is whether assisted suicide belongs in this subset. It would certainly be a divisive issue among Amnesty International members, but the organization is pledged to values beyond self interest.
    2. Others
    These include organizations of medical professionals and organizations of PWDs. Not surprisingly, professional organizations have emphasized the "safe" issues such as the torture or genocide of a fallen regime, and in such sources as the British Medical Association's Medicine Betrayed one finds extensive treatment of such issues as practices of prison doctors and forced feeding but no treatment of the ending of life.
    Professional organizations generally include weak organizations at the international level, and strong national associations. A recurrent topic of debate is over whether debates should be "above politics" so as to avoid alienating constituents. Two cases where this happened were in the Cold War rivalry reflected in the World Psychiatric Association’s Declaration of Hawaii and the World Medical Association’s Declaration of Tokyo.
    Debate over the end of life has been aided by the participation of those who were often excluded, PWDs. And prominent activists globally have come from Disabled Peoples International. Typically the strong stance will resemble that taken in the DPI-Europe Bioethics Declaration: "We demand…that disabled people have assistance to live-not assistance to die."
    Mention should also be made of Mental Disability Rights International, the Institute for Independent Living, and a range of activist groups nationally. One of the largest, devoted exclusively to this issue, is Not Dead Yet in the United States.
    Another case is that of TASH-Disability Advocacy Worldwide. A December 1997 resolution of that organization specifically declared that group’s opposition to legalization of physician assisted suicide.
    Although many individuals and groups dealing with disability issues have reacted strongly and negatively to policies aimed at ending life, that sentiment is far from universal. In the United States, Hugh Gallagher, author of invaluable research on Nazi euthanasia, and Drew Batavia, Maine law professor and former aide to Senator and Presidential aspirant John McCain wrote and circulated a declaration of disability rights which read in part: "WE BELIEVE the disability rights movement is based fundamentally on the autonomy and self-determination of people with disabilities, and that individuals with disabilities should be allowed to control all aspects of their lives" (Batavia and Gallagher).
    In addition "right to die" societies and Hemlock Societies are active in many nations and internationally.
  7. The United Nations. Although to some observers, the development of the system of human rights protection has been remarkably slow, the "ripening" of the Universal Declaration of Human Rights, the drafting and entry into force of the Covenants, the creation of a High Commission, and agreement on an International Criminal Court stand as a few of the significant milestones testifying to unprecedented progress. This is progress with gaps, however, and one of these gaps is in dealing with the relationship between the end of life and human rights.

Of course the "biggies" are a General Assembly resolution, the Universal Declaration of Human Rights and a treaty, the International Covenant on Civil and Political Rights. Key provisions are included in Tables 2 and 3. Essentially these reflect the fact that there is no explicit treatment of issues of ending life although there is lots of language that can be and is used by advocates on both sides of the controversy.

Yoram Dinstein offers an analysis of the Covenant in which he explicitly poses the question "Is euthanasia permissible?" (120) and answers that "Article 6 does not address itself to this subject, nor, for that matter do other human rights documents. Evidently, the right to life is guaranteed to all human beings without exception, including the incurably sick, congenitally deformed children, senile men and women, the insane, etc" (120).

After suggesting that "the gist of the question is ‘how far the consent of the victim may negate what would otherwise be a violation’ of the right to life; i.e., whether waiver of the right is permissible" (121) Dinstein offers the cogent observation, "It is all too easy to kill ‘undesirables’ under the guise of mercy" (121).

A similar concern has been expressed by some members of the Human Rights Committee. Especially when state-practiced it is especially likely to be criticized. But these criticisms and the counterarguments are more "plausible interpretations" than definitive rulings.

A plethora of General Assembly resolutions have been adopted reflecting a broad consensus. Because of this they frequently contain language that can be invoked in debates over ending life, but not specifics to resolve debates over ending life.

Examples are the Principles for the Protection of Persons with Mental Illness adopted by General Assembly resolution 46/119 of 17 December 1991, The Declaration on the Rights of Mentally Retarded Persons proclaimed by General Assembly resolution 2856 (XXVI) of 20 December 1971 and the Declaration on the Rights of Disabled Persons proclaimed by General Assembly resolution 3447 (XXX) of 9 December 1975 the same fundamental rights as their fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and full as possible.

The Genocide Convention and subsequent creation of an International Criminal Court might be thought to be appropriate avenues through which the worst abuses of euthanasia might be addressed. The language of the Genocide Convention indicates that that hasn't happened, however. The 1948 Convention on the Prevention and Punishment of the Crime of Genocide provides in Article 2, that it covers acts "committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group." Simply put, the Nazi euthanization of people with disabilities did not by itself meet the definition of genocide. Nor would the early killings in Rwanda and Cambodia, directed against PWDs qualify as genocide (See e.g. Blaser). The limitation is repeated in the Statute of the International Criminal Court.


2. Other

The United Nations system is very complex, so often an issue addressed in one part will be addressed by another. But caution or reluctance in addressing issues related to ending life seems to be a general practice.

The devaluation of human life on the basis of disability was addressed by a Special Rapporteur: "The worst form of discrimination against the mentally handicapped is the campaign to legalize the termination of life of severely handicapped newborn children" (Despouy, 27). The termination of adults’ lives was not given similar attention, however.

A second example is the Report of the United Nations Consultative Expert Group Meeting on International Norms and Standards Relating to Disability. This was convened by the United Nations in Berkeley, United States on 8-12 December 1998.

Similarly, specialized agencies of the United Nations have implicit human rights standards. A number of these with the United Nations Educational, Scientific, and Cultural Organization (UNESCO) were raised by Gregor Wolbring, quoted later in this paper.


IV. Implications

A. An Issue Whose Time Has Come, Passed, and Will Recur

With issues such as the Rwandan genocide, child soldiers, and the death penalty to contend with, there is an urge to begin with those on which there is greatest agreement, and to save others for later. There is also a realization that in most of the world, access to simple inoculations or access to food is more urgent: choosing to die usually involves those whose basic needs are met.

The issue of ending life, though, contains within it issues that are global and significant. These are issues relating to total and expert power. In the former Soviet Union the world's conscience was called to issues of psychiatric abuse in institutions. Some of the reluctance to criticize practices which violated human rights standards was due to a reluctance to call attention to practices in critics' countries that were similar. Although writers have written of an "end to ideology" the temptation to grant experts power over those deemed "less worthy" is growing greater rather than diminishing.

B. Addressing the Issue: The Medium May Be the Message

The issue of who participates and who doesn’t has been raised at meetings of UNESCO and elsewhere. An example from a UNESCO meeting is in "Science and Society, Critical Comments on the 1999 World Conference on Science, Budapest, Hungary" by Gregor Wolbring. Wolbring commented: "it seemed as if I was the only one voicing concerns of disabled people. Now if you look into how many people attended the conference you can do the math that the percentage was 0.0.... for disabled people."

Other observers have noted that group underrepresentation at international for a is common, and gender, ethnicity, age, and profession are often not proportionally representative. Most human rights documents explicitly call for representatives to be of high moral character, and presumably able to take into account the interests of groups of which they are not a part.

That presumption may not be warranted, however. Put simply, representatives to international organizations are unlikely to take the perspectives of PWDs as more accurate than those of the "experts", the physicians: "physicians consistently underestimate the quality of living for those individuals who are disabled" (Dr. Katherine Foley, cochief of the Pain and Palliative Care Service at the Memorial Sloan-Kettering Cancer Center, quoted in Linton, 43).

In conclusion, if we search for explicit statements about ending life in international human rights documents we will be disappointed. But if one were to urge that the implicit language immediately be replaced by explicit language that language would reflect the failure of international institutions to include PWDs. Thus the issues of who defines human rights and how human rights are defined should be handled simultaneously.



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