|The Impact of Technology on Human Rights: Global Case-studies (UNU, 1993, 322 pages)|
|6. Western European case-study: The impact of advanced methods of medical treatment on human rights|
1. Cf. Z. Kedzia, "Accession of Non-Member States to the European Convention on Human Rights," Expert Study for the Committee on Legal Affairs and Human Rights of the Parliamentary Assembly of the Council of Europe (Strasbourg, 1990), (Council of Europe Document AS/Jur (42) 4).
2. Cf. P. van Dijk and G.J.H. van Hoof, De Europese Conventie in theorie en prattijk (Ars Aequi Libri, Nijmegen, 1990);J.A. Frowein and W. Peukert, Europäische Menschenrechtshonvention - EMRK - Kommentar (Engel, Kehl/Strasbourg/Arlington, 1985).
3. Cf. Andrew Drzemczewski, European Human Rights Convention in Domestic Law (Clarendon Press, Oxford, 1983).
4. Cf. M. Nowak, "The Implementation of the European Convention on Human Rights in Austria," in N. Mikkelsen, ed., The Implementation in National Law of the European Convention on Human Rights (Danish Centre of Human Rights, Copenhagen, 1989); F. Ermacora, M. Nowak, and H. Tretter, eds., Die Europäische Menschenrechtshonvention in der Rechtsprechung der österreichischen Höchstgerichte (Braumüller, Vienna, 1983).
5. Cf. P. van Dijk, "Domestic Status of Human Rights Treaties and the Attitude of the Judiciary - The Dutch Case," in M. Nowak, D. Steurer, and H. l retter, eds., Progress in the Spirit of Human Rights - Festschrift fur Felix Ermacora (Engel, Kehl am Rhein/Strasbourg/Arlington, 1988), p. 631; L. Zwaak, "The Implementation of International Human Rights Treaties in the Dutch Legal Order," in Mikkelsen (note 4 above), p. 40.
6. Cf. A. Lester, "The Prospects for Incorporation of the European Convention on Human Rights into United Kingdom Law," in Mikkelsen (note 4 above), p. 72.
7. Cf. M. Nowak, "Adhesion of Non-Member States to the European Convention on Human Rights," Expert Study for the Committee on Legal Affairs and Human Rights of the Parliamentary Assembly of the Council of Europe (Strasbourg, 1990), p. 10 (Council of Europe Document AS/Jur (42) 3).
8. See, for example, case 5935/72, X v. Federal Republic of Germany, Yearbook XIX (1976), pp. 284-286. In this case, concerning the legitimation of a restriction on the right to private life (Article 8 ECHR), the European Commission of Human Rights clearly stated that to make a decision on the admissibility of such a restriction it takes into account the latest developments within the country as well as outside the national context.
9. In this contribution the words "physician" and "patient" are used as general terms to refer to the providers and recipients of health care. Although we are aware that the words can be inappropriate in some situations - particularly in the cases of predictive medicine, pregnancy, artificial procreation, voluntary sterilization, blood and organ donation, etc. - for the ease of survey and the reader's convenience we decided to use these words as umbrella expressions .
10. Cf. KNMG/LCPC, Modelregeling arts-patiënt (Het Centrum, Utrecht, 1990).
11. H.D.C. Roscam Abbing, International Organizations in Europe and the Right to Health Care (Kluwer, Deventer, 1979), p. 105; and H.JJ. Leenen, Handboek gerondbeidsrecht -rechten van mensen in de gezondbeidszorg, 2nd ed. (Samsom Uirgeverij, Alphen aan den Rijn, 1988), p. 23.
12. Notably UN General Assembly Resolution 2450(XV111) of 19 December 1968.
13. The so-called Nuremberg rules are considered to be an important sour<e of international customary law.
14. Cf. Leenen (note 11 above), p. 151.
15. Final Act of the International Conference on Human Rights, Tehran, 22 April to 13 May 1968, p.5.
16. Cf. Recommendations of the Dutch Board of Health between 1979 and 1982 ("Adviezen van de Centrale Raad voor de Volksgezondheid").
17. Cf. Declaration of Lisbon "The Rights of the Patient," adopted by the Thirty-fourth World Medical Assembly, September/October 1981.
18. P.T. Smit, Patiëntenparticipatie - patiëntenrecht (Bohn, Scheltema, & Holkema, Utrecht/Antwerp, 1984).
19. Cf. European Court of Human Rights, Belgium Linguistical Case, 23 July 1968 (Series A, no. 6 (1968), pp. 24-25), and the report of I March 1979 in the Van Oostermijck Case (Series B. no. 36 (1983), p. 24). See also Resolution 428 (1970) of the Consultative Assembly of the Council of Europe, stating that the right to privacy "consists esentially in the right to live one's own life with a minimum of interference. "
20. Cf. M. Nowak, UNO-Pakt über bürgerliche und politische Rechte und Fahultativprotokoll - CCPR-Kommentar (Kehl/Strasbourg/Arlington, 1989), pp. 302 ff.
21 . See Recommendation (note 16 above), Article 10.
22. According to medical professional codes, a physician has to respect the patient's right to autonomy. Cf. Article 9, "Rules for the Relation with Patients," in Koninklijke Nederlandsche Maatschappij tot bevordering van de Geneeskunst (KNMG), Gedragsregels voor artsen, 2nd ed. (Utrecht, 1984).
23. Cf. Council of Europe, Cons. Ass. Twenty-first Ordinary Session (Third Part), Texts Adopted (1970), and Council of Europe, Collected Texts (Strasbourg 1979), p. 911.
24. According to Pieter van Dijk, some principles have such a fundamental character that they are the basis for the overall legal system and as such automatically incorporated in the legal order, regardless of whether they are embodied in rules or not. P. van Dijk, "Het internationale recht inzake de rechten van de mens," in Rechten van de mens in mundiaal en Europees perspectief (Ars Aequi Libri, Nijmegen, 1978), p. 22.
25. Cf. Nowak (note 20 above), pp. 133 ff.
26. Cf. Nowak (note 20 above), pp. 306 ff.; M.J. Bossuyt, Guide to the "Travaux Préparatoires" of the International Covenant on Civil and Political Rights (Kluwer, Dordrecht, 1987), p. 346 ff.
27. Articles 6(1), 17(2), 23, 24, 26, and 27 CCPR. Cf. Nowak (note 20 above), pp. 40 ff.
28. Similarly Article 11(3) ACHR.
29. Cf. Nowak (note 20 above), pp. 304 ff.
30. Cf. van Dijk and van Hoof (note 2 above), pp. 417-418; and Frowein and Peukert, (note 2 above), pp. 198 ff. See also the judgments of the European Court of Human Rights in the cases of Raes (Series A, no. 106 (1987), pp. 24-26), X and Y v. the Netherlands (Series A, no. 91 (1985), pp. 22-23), and Airey v. Ireland (Series A, no. 32 (1980), pp. 11-16), as well as the report of the European Commission of Human Rights in the case of Van Oosterwijck v. Belgium (Report of I March 1979, Series B. no. 36 (1983), p. 26).
31. E. Jacobs, ed., De bio-maatschappij- een humanistische visie op de ethiek van het biomedisch handelen (Acco, Enschede, 1990), pp. 56 ff.
32. Cf. Leenen (note 11 above), pp. 29 and 174. Compare also Article I of the Declaration of Mentally Retarded Persons (proclaimed by the United Nations General Assembly Resolution 2856 (XXVI) of 20 December 1971): "The mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings. "
33. Human Rights - A Compilation of International Instruments (Centre for Human Rights, United Nations, New York, 1988), p. 391.
34. See note 33 above, pp. 400-401.
35. See also: World Health Organization Regional Office for Europe, Health Legislation in Europe, WHO ICP/HLE 101 (Copenhagen, 1985), and H.J.J. Leenen, G. Pinet and A.V. Prims, Trends in Health Legislation in Europe (Masson, Paris, 1986).
36. Cf. Leenen (note 11 above), p. 155.
37. This Convention came into force on I October 1985 after France, the Federal Republic of Germany, Norway, Spain, and Sweden ratified the treaty.
38. As of I June 1990, 179 of 185 countries and areas collaborate with the Global Programme on AIDS (GPA), a special unit within the WHO, based in Geneva. See Global AIDS Factfile -Case Review, June 1990. Collaboration may vary from the technical evaluation of the national HIV/AIDS situation to the formulation of national programmes, setting up of adequate health-care facilities, etc.
39. Cf. A. Hendriks, "The Right to Freedom of Movement and the (Un)lawfuluess of AIDS/HIV Specific Travel Restrictions from a European Perspective," in The Nordic Journal of International Law (1990), and R. Frankenberg, The Other Who is Also the Same: Epidemics in Space and Time: Youth and AIDS (Berkeley/Keele, 198/89).
40. Cf. "London Declaration on AIDS Prevention," World Summit of Ministers of Health, London, 28 January 1988. "Health Legislation and Ethics in the Field of AIDS and HIV Infection," report on an international consultation, Oslo, 26-29 April 1988; V. Boltho-Massarelli, "Incidences éthiques du SIDA (dans le cadre sanitaire et social," in D. Borillo and A. Masseran, eds., SIDA et droits de l'homme (GERSULP, Strasbourg, 1990), pp. 19-28; and K. Tomasevski, "Equality and Non-discrimination: Action by the International Community against AlDS-related Discrimination," written communication presented at the seventh International Colloquy on the European Convention on Human Rights (Council of Europe H/Coll (90) 14).
41. Cf. Leenen (note 11 above), pp. 155-156.
42. In early 1990 the Directorate-General V (Employment, Industrial Relations, and Social Affairs) of the Commission commissioned several studies to be carried out to research problems of access to health-care services for particular persons/patients in the EC Member States and discrimination against people on the basis of their health status.
43. Cf. conclusions of the Council and the Representatives of the Governments of the Member States meeting within the Council of 31 May 1988 concerning AIDS (88/C 197/05).
44. H.J.J. Leenen, "Patiëntenrechten in internationaal perspectief," in Tijdschrift voor gezondheidsrecht, no. I (1987): 2-6; and Leenen, Pinet, and Prims (note 35 above), pp. 1-36.
45. For an analysis of the Dutch system, see D. Zeegers, "Het medisch tuchtcollege en openbaarheid" (final thesis) (Rijksuniversiteit Groningen, Groningen, 1987).
46. See P. Sieghart, The International Law of Human Rights (Clarendon Press, Oxford, 1983); van Dijk and van Hoof (note 2 above); Frowein and Peukert (note 2 above); Nowak (note 20 above); T. Buergenthal, R. Norris and D. Shelton, Protecting Human Rights in the Americas: Selected Problems (Engel, Strasbourg, 1982); P. Sieghart, AIDS and Human Rights - A UK Perspective (British Medical Association Foundation for AIDS, London, 1989).
47. The legal literature on artificial procreation in Western Europe and other industrialized countries has developed rapidly in recent years. Our considerations are based, above all, on the following studies which all contain a number of further references: C.G. Weeramantry, The Slumbering Sentinels, Law and Human Rights in the Wake of Technology (Penguin Books Australia, 1983); Douglas J. Cusine, New Reproductive Techniques: A Legal Perspective (Gower, Aldershot, 1988); Sheila A.M. McLean, ed., Legal Issues in Human Reproduction (Gower, Aldershot, 1989); Theo Öhlinger/ Manfred Nowak, "Grandrechtsfragen künstlicher Fortpflanzung," in Bundesministerium für Familie, Jugend, und Konsümentenschutz, ed., Familienpolitik und kunstliche Fortpftanzung (Vienna, 1986); Richard Frank, Die künstliche Fortpflanzung beim Menschen im geltenden und im künftigen Recht (Schuithess, Zurich, 1989); Meinhard Knoche, ed., Wege zur europaischen Rechtsgemeinschaft (Göres, Koblenz, 1988), pp. 52-167.
48. Cf. Cusine (note 47 above), pp. 11 ff.
49. Cf. Douglas Cusine, "Legal Issues in Human Reproduction", in McLcan (note 47 above), pp. 17, 20 ff.
50. Cf. Cusine (note 47 above), pp. 36 ff.
51. Cf. Cusine (note 49 above), p. 29; see also para. 6.8 of the famous British "Warnock Report": Report of the Committee of Enquiry into Human Fertilisation and Embryology, Cmnd. 9314, 1984.
52. Cf. Cusine (note 47 above), pp. 130 ff.
53. Cf. Cusine (note 47 above), pp. 143 ff.; Cusine (note 49 above), note 2, pp. 30 ff.; Michael Freeman, "Is Surrogacy Exploitative?", in McLean (note 47 above), pp. 164 ff.
54. See CE-Doc. MDH (85)3 (Strasbourg, 1985).
55. Cf. for the following Öhlinger/Nomak (note 47 above), pp. 32 ff.
56. Cf. Weeramantry (note 47 above), p. 201.
57. See e. g. Article 1 7 of the Austrian Basic Law on Fundamental Rights of the Citizens 1867 (RGBI 1867/142).
58. On 25 May 1989, the Danish Parliament passed a law enabling gay and lesbian couples to register their relationship at a civil registration, which gave them almost the same rights and duties as married couples. It is believed that more countries are to follow, notably Sweden, the Netherlands, and France.
59. On the other hand, European states seem to be very reluctant to allow, for example, legally residing immigrants to have more than one spouse from the country of origin coming to the European country concerned on the basis of family reunion.
60. Cf. Weeramantry (note 47 above), pp. 201 ff.
61. Cf. e.g. Wolfgang Graf Vitzthum, "Die Menschenwürde als Verfassungsbegriff"," in Juristeuzeifung (JZ) (1985), p. 201; Heribert Ostendorf, "Juristische Aspekte der extrakorporalen Befruchtung und des Embryotransfers beim Menschen," in Ulrich Jüdes, ed., In-vitro-Fertilisation und Embryotransfer (Retortenhaby) (Wissenschaftliche Verlagsgesellschaft, Stuttgart, 1983), p. 177; Ernst Benda, "Humangenetik und Recht - eine Zwischenbilanz," Nene Juristische Wochenschrift (1985), p. 1730; Günter Jerouschek, "Vom Wert und Unwert der pränatalen Menschenwürde," JZ (1989), p. 279; und Dieter Giesen, "Genetische Abstammung und Recht", JZ (1989), p. 364.
62. Cf. however, Freeman (note 53 above), p. 177, who arrives at the conclusion "that the principal objection to surrogacy - that it exploits or dehumanizes women - does not stand up to critical examination."
63. Cf. Öhlinger/Nowak (note 47 above), pp. 34 ff.; Manfred Nowak, UNO-Pakt über bürgerliche und politische Rechte und Fahultativprotokoll, CCPR-Kommentar (Engel, Kehl am Rhein/Strassburg/Arlington, 1989), pp. 441 ff.
64. Cf. also Thilo Ramm, "Die Fortpflanzung - ein Freibeitsrecht?," Juristenzeitung (1989), pp. 861 ff., who alleges a new positive freedom to artificial procreation in German law.
65. Cf. Nowak (note 63 above), pp. 310 ff.
66. Cf. case 1990/88 "Vordering tot ondergaan van IVF behandeling in K.G. afgewezen" (K.G. 1990/286), in Tijdschrift voor gezondheidsrecht, no. 7 (1990). In this case a childless couple who had been trying to get access to IVF treatment for several years addressed the President of The Hague District Court, Netherlands, after they were finally denied treatment by a medical team after two years of interdisciplinary research. Though there were no specific medical objections, the specialists concerned alleged that the relationship of confidence with the couple was insufficient to carry out such a treatment. The President of the District Court agreed with the defendants that the refusal of the spouse to pass personal information about his temporary detention had indeed undermined the relationship of confidence and justified the defendants' refusal to provide the IVF treatment.
67. Cf. Jochen A. Frowein/Wolfgang Peukert, Europäische Mensrbenrechtshonvention, EMRK-Kommentar (Engel, Kehl am Rhein/Strassburg/Arlington, 1985), pp. 314 ff; Nowak (note 63 above), pp. 503 ff.
68. Cf. Nowak (note 63 above), p. 56.
69. Nowak (note 63 above), pp. 40 ff.
70. Nowak (note 63 above), p. 459. See also A.J.M. Delissen, "De rechten van het kind: na 10 jaar voorbereidingen nu bij verdrag vastgelegd," in NJCM Bulletin, no. 15-5, August 1990.
71. See e.g. para. 57 of the report of the European Commission on Human Rights in the case of Brüggemann and Stheuten v. Germany (Application no. 6959/75, D. R. 10, p. 116): "the concept of private life in Article 8. . . also comprises. . . the right to establish and to develop relationships with other human beings, especially in the emotional field for the development and fulfilment of one's own personality." See also the case of X v. Ireland (Application no. 6825/75, L).R. 5, p. 86).
72. Cf. Nowak (note 63 above), p. 315.
73. See the Memorandum of the Austrian delegation to the European Ministerial Conference on Human Rights 1985, p. 2 (Council of Europe Document MDH (85)8); Öhlinger/Nowak (note 47 above), p. 40.
74. Lag om Insemination of 20 December 1984, SFS (1984), p. 1140.
75. Judgement of 31 January 1989, 1 BvL 17/87: cf. Dieter Giesen, "Genetische Abstammung und Recht", Juristeuzeitung (1989), pp. 364 ff.
76. Cf. Öhlinger/Nowak (note 47 above), pp. 37 ff.
77. R. Frank (note 47 above), pp. 13 ff., refers in general to the date of procreation and assumes in the case of IVF that procreation was only achieved with the successful implantation of the embryo. One might doubt this reasoning.
78. Cf. Cusine (note 49 above), p. 24.
79. In the non-industrialized countries this percentage is lower owing to the direct and indirect effects of poverty, such as starvation, lack of health education, scanty health facilities, lower hygienic standards, more limited access to programmes to control infectious diseases, financial restrictions in carrying out vaccination programmes, etc.
80. Other terms used to refer to the manipulation and recombining of genetic materials of (living) organisms are genetic engineering and gene splicing. See Recommendation 934 (1982) of the Parliamentary Assembly of the Council of Europe.
81. See Palacios (Rapporteur), "Report on Scientific Research relating to the Human Embryo and Foetus," Parliamentary Assembly of the Council of Europe, 13 September 1988, p. 54 (Doc. 5943).
82. This is, for instance, the case when there is a disorder in the replication process of cells, and the overproduction of new cells causes tumours ("cancer"). Through radiation treatment or by administering a cell-killing remedy ("cytostatica") under favourable circumstances the harmful cells can be destroyed and the cancer process stopped.
83. E. Jacobs, ed., De biomaatschappij - een humanistische visie op de ethiek van het biomedisch handelen (Acco, Enschede, 1990), p. 72.
84. The term "carrier" is used here to indicate an individual who possesses a recessive gene together with its normal allele. Although the recessive gene is not expressed, the individual can transmit the gene to his/her offspring, where the trait can manifest itself if another recessive gene at the same site is inherited from the other parent. If the recessive gene embodies a defect or susceptibility to a disease this can have far-reaching consequences.
85. S. L. Mansour, K. R. Thomas, and M. R. Capecchi, "I)isruption of the Protooncogene Int-2 in Mouse Embryo-derived Stem Cells: A General Strategy for Targeting Mutations to Non-selectable Genes," Nature, no. 336 (1988): 348-352.
86. In the literature a differentiation is sometimes made between genetic monitoring and genetic testing. Genetic monitoring should be understood as measuring the changes of, and particularly injurious influences on, the human genome during a particular period. Against this, genetic testing is a means of predicting a person's medical biology by examining his/her genome.
87. G. Anders, "De erfelijkheidsvocrlichting," Metamedica (1981), p. 166; and B. ter Haar and M. Niermeyer, "Erfelijkheidsadvies," Nederlands tijdschrift voor gezondheidszorg, no. 49 (1982): 2245-225t.
88 This moratorium lasted, however, for less than a year.
89. During the Second World War experimentations with human beings were carried out by German physicians, particularly on prisoners kept in the so-called concentration camps. Cf. "Experimente an Häftingen", in K. Smolen, Auschmitz- ein Gang durch das Museum (Panstwowe Muzeum w Oswiecimiu, Oswiecim, 1974), p. 73; and Wspomnienia Rudolfa Hoessa kamendanta obozu Oswiecimskiego (Memories of Rudolf Höss, commandant at Auschwitz camp) (Warsaw, 1960), pp. 349-351.
90. J. Klaassen, "Gentechnologie in West-Duitsland stuit op heftig verzet," De Vokskrant, 21 October 1989.
91. NRC Handelshlad, 9 November 1989.
92. These organisms are considered to be harmless and the risk of an accident with serious consequences is consequently minimal.
93. Recommendation of the European Medical Research Councils, "Gene Therapy in Man," Lancet, no. 1 (1988): 1271-1272.
94. On a European level, reference should be made to the Council of Europe's Convention for the Protection of Individuals with regard to Automatic Processing of Data (1981), which came into force on I October 1985.
95. H.J.J. Leenen, Handboek gezondbeidsrecht - rechten van mensen in de gezondheidszorg, (Samsom Uitgeverij, Alphen aan den Rijn, 1988), p. 94.
96. Article 3 ECHR and Article 7 CCPR.
97. Cf. e. g. Article 8(2) ECHR: "There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of a country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others. "
98. Gezondheidsraad, Erfelijkheid: maatschappij en wetenschap, Advies No. 31/89, The Hague, 29 December 1989, p. 7.
99. Cf. note 89 above. See also R. Plant, De roze driehoek - Nazivervoiging van homoseksuelen (Veen, Utrecht/Antwerp, 1987), p. 153 ff.
100. See Article 5 of the draft recommendation of the report on scientific research relating to the human embryo and foetus, prepared by Mr Palacios, Rapporteur, for the Committee on Science and Technology of the Parliamentary Assembly of the Council of Europe, 13 September 1988 (Doc. 5943).
101. R. Green, "Justice and the Claim of Future Generations," in E. Shelp, ed., Justice and Health Care (Reidel Publishing Company, 1981).
102. In some respects this is less the case for persons who lack competence (e.g. minors) or the capacity (e.g. persons under tutelage) to make legally binding decisions. In these cases there are usually one or more legal guardians, who are authorized to decide instead of the incompetent or incapable person. The legal guardian is under a duty in so far as his/her decisions should best meet the interests of the person he/she represents. See also F.C.B. van Wijmen, Dtiehoeksverhoudingen - Gezondheidsrechtelijke beschouwingen over vertegen-woording van merrderjarige oubekwamen, Preadvies uitgebracht voor de jaarvergadering van de Vereniging van Gezondheidsrecht op 27 april 1990.
103. Cf. case 8307/78, De Klerck v. Belgium (1:) & R 21 (1981)), pp. 116 ff. See also case 8962/80, X and Y v. Belgium (D & R 28 (1982)), pp. 112 ff. and case 6959/75, Brüggemann and Scheuten v. Federal Republic of Germany (Yearbook XIX (1976)), pp. 382 ff.
104. Cf. Leenen (note 95 above), p. 144. See also van Dijk and van Hoof, De Europese conventie in theorie en in praktijk (Ars Aequi Libri, Nijmegen, 1990), p. 444.
105. In the view of some Dutch religious communities, blood transfusions or the administration of other blood products, for example after an accident, are unacceptable, as the accident is considered to reflect God's will. The Council for the Protection of Children has decided that, while respecting the parents'/guardians' religious convictions, the life and well-being of the minor should take precedence: Leenen (note 95 above), pp. 148- 149.
106. According to the Lima Declaration on Academic Freedom and Autonomy of Institutions of Higher Education, adopted by the International General Assembly of World University Service (WUS) in September 1988, research is one of the essential activities members of the academic community should be able to engage in.
107. Declaration on the Use of Scientific and Technological Progress in the Interest of Peace and the Benefit of Mankind, United Nations General Assembly resolution 3384 (XXX) of 10 November 1975.
108. Cf. H.J.J. Leenen, "Geen vrijheid zonder wetten," in S. Dresden and D. van der Kaa, eds., Wetenschap ten goede en ten kwade (Koninklijke Nederlandse Akademie van Wetenschappen, Noord-Zuid Hollandsche Uitgevers Maatschappij, 1984). See also C.G. Weeramantry, The Slumbering Sentinels - Law and Human Rights in the Wake of Technology (Penguin Books Australia, 1983), pp. 201 ff.
109. See Article 5 UDHR, Article 3 ECHR, Article 7 CCPR, the Nuremberg Code, and the Declaration of Helsinki (Biomedical Research in Man) by the World Medical Association. The latter three explicitly contain a prohibition of medical and scientific experimentation with human beings.
110. Cf. L. Offerhaus, "Clinical trials: regels en regelgeving," in Tijdschrift voor gezondheidsrecht, no. 6 (1990): 362-370.
111. Offerhaus (note 110 above), pp. 368-369. See also E.F. Hvidberg, "Good Clinical Practice - A Way to Better Drugs," Editorial, British Medical Journal, no. 299 (1989): 580-581.
112. Cf. W. French Anders, "Human Gene Therapy,"Journal of Medicine and Philosophy, no. 3 (1985): 275-291.
113. Cf. Jacobs (note 83 above), p. 72.
114. See Article 2 (1) CERD and the anti-discrimination clauses embodied in Article 2, UDHR; Articles 2, 3, 23, 24, 26 CCPR; Articles 2, 3 CSECR; Preamble to the Constitution of the WHO; Articles 2, 18 ACHPR; Article 1 ACHR: Article 14 ECHR; and the Preamble to the ESC.
115. No clear human rights standards have been defined for future generations yet.
116. Recommendation 934 (1982) on Genetic Engineering, Parliamentary Assembly of the Council of Europe, 33rd ordinary session, adopted on 26 January 1982.
117. See Article 1: "the right to a genetic inheritance [ . . . ] should not be interfered with except for therapeutic purposes."
118. Cf. Eindrapport van de Commissie ter bestudering van de maatschappelijke en ethische aspecten van werkzaamheden met erfelijk materiaal (Staatsuitgeverij, The Hague, 1983).
119. I.e. bodies in which citizens directly participate or in which they at least represent the electorate.
120. As was proposed for the Netherlands, cf. Recombinant DNA, Eindrapport van de commissie ter bestudering van de maatschappelijke en ethische aspecten van werkzaamheden met erfelijkheidsmateriaul (Staatsuitgeverij, The Hague, 1983). Also J.K.M. Gevers, "Rechtsvragen rond medische toepassingen van recombinant-DNA-techniek: het rapport van de brede DNA commissie," Tijdschrift voor gezondheidsrecht, no. 2 (1985): 65-78. For a case-study on Dutch psychiatric hospitals, F.J. Roos, "Toetsing van experimenteel onderzoek in psychiatrische zickenhuizen, " Tijdschrft voor gezondheidsrecht, no. 4 (1987): 249-255.
121. In the case of"ordinary" medical interventions physicians have more freedom to act, as there are several situations where consent can be assumed or where physicians have a certain discretion to carry out urgent interventions if the patient does not have the competency or the legal capacity to give voluntary consent. See Leenen (note 95 above), pp. 175- 183.
122. Notably within the context of the CSCE negotiations, where there is a special "basket" on disarmament.
123. Cf. the Declaration of Helsinki Recommendations Guiding Doctors in Clinical Research (WMA, 1964/197511983).
124. See Article 13 of Recommendation 1046 (1986) on the Use of Embryos and Foetuses for Diagnostic, Therapeutic, Scientific, Industrial and Commercial Purposes by the Parliamentary Assembly of the Council of Europe.
125. Cf. N. Gilmore and M. A. Somerville, Physicians, Ethics and AIDS - A Discussion Paper (Canadian Medical Association, Ottawa, 1989), p. 21; and K. Tomasevski, "Equality and Non-discrimination: Action by the International Community against AlDS-related Discrimination," written communication to the seventh International Colloquy on the European Convention on Human Rights, Council of Europe, Strasbourg, 1990 (H/Coll (90)14).
126. H.D.C. Roscam Abbing, "Anonieme screening op HIV: alles nog eens op een rij," Medisch contact, no. 47 (1989): 1548.
127. In this text a medical examination is mandatory if undergoing such an examination is a prerequisite to obtain, or to avoid losing, a benefit or status or to be allowed to participate in some activity. Like a voluntary examination, a mandatory medical examination requires the person's informed consent. Consequently a person can refuse an examination. A medical examination is compulsory when the person cannot avoid being examined or has no way of avoiding an undertaking which requires undergoing a medical examination.
128. Cf. A. Hendriks, "The Right to Freedom of Movement and the (Un)lawfuluess of AIDS/HIV Specific Travel Restrictions from a European perspective,'´ Nordic Journal of International Law (1990); R. Frankenberg, The Other Who is the Same: Epidemics in Space and Time; Youth and AIDS (Berkeley/Keele, 1988/89); J. P. Baud, "Histoire institutionelle des maladies exotiques," SIDA et droits de l'homme - I'epidémie dans un Etat de droit (GERSULP, Strasbourg, 1990), pp. 65-76; and G. Grau, AIDS - Krankheit oder Katastrophe? (Verlag Neues Leben, Berlin, 1990).
129. "Physician" is the general term used in this text for a health-care provider who at least has passed a medical examination at a recognized medical school or university, and who is entitled to practise his/her profession according to standard provisions and national regulations; see also the Tokyo Declaration of the WMA "containing Guidelines for Medical Doctors concerning Torture and other Cruel, Inhuman or Degrading Treatment or Punishment in relation to Detention and Imprisonment" (1975). This rule, however, is not always respected. In 1982 the General Assembly of the United Nations Organization stated "that throughout the world significant medical activities are being performed by health personnel not licensed or trained as physicians, such as physician-assistants, paramedics, physical therapists, and nurse practitioners," Resolution 37/194 of 18 December 1982, "Principles of Medical Ethics Relevant to the Role of Health Personnel, particularly Physicians, in the Protection of Prisoners and Detainees against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment."
130. Cf. the universal Oath of Hippocrates for physicians and the Declaration of Geneva of the World Medical Association, 1948/1968/1983.
131. "Richtlijnen inzake het geven van inlichtingen aan de pers, politie, familie, etc. over patiënten die in zickenhuisinrichtingen opgenomen zijn danwel zich om medische hulp tot deze inrichten wenden c.q. hebben gewend," Medisch contact, no. 36 (1980): 1110.
132. Article 6 of the Convention on the Protection of Individuals with regard to Automatic Processing of Personal Data (Council of Europe Convention)
133. For further information see L. F. Markenstein and T.A.M. te Braake, De patiënt en zijn medishe gegevens - een analyze van jurisprudentie (Vakgroep Gezondheidsrecht, Rijksuniversiteit Limburg, Maastricht, 1985); J.K.M. Gevers, "Rechtsvragen rond medische toepassing van recombinant-DNA-techniek," Tijdschrift voor gezondheidsrecht, no. 2 (1985): 65-78; H.J.J. Leenen, G. Pinet, and A.V. Prirns, Trends in Health Legislation in Europe (Masson, Paris, 1986), pp 13-18; H.D.C. Roscam Abbing, Privacy bescherming, medische (persoons) gegevens en wetenschappelijk onderzock (Vakgroep Gezondheidsrecht, Rijksuniversiteit Limburg, Maastricht, 1988).
134. Cf. W. Wachsmuth and H. Schreiber, "Grenzen der ärztlichen Aufklärungspflicht im Westeuropäischen Vergleich," Deutsches Medizinisches Wocheuzeitschrift, no. 4 (1984): 153-155; H.M. Dupuis, "Informed Consent," Handboek gezondheidsethick (van Gorcum, Assen, 1988), pp. 217-225; H.D.C. Roscam Abbing, "Het toestemmingsbeginsel en het onderzoek op HlV-infecties," Nederlands tijdschrift voor geneeskunde, no. 131 (1987): 1420-1422.
135. The legitimate restrictions on the right to privacy are exhaustively enumerated in Article 8(2) ECHR. Article 17 CCPR is less detailed than Article 8 ECHR, although it prohibits arbitrary and unlawful interferences. In practice the restrictions permitted by Article 8 ECHR will also be permissible by Article 17 CCPR. See P. Sieghart, The International Law of Human Rights (Clarendon Press, Oxford, 1983); van Dijk and Hoof (note 2 above); Frowein and Peukert (note 2 above); Nowak (note 20 above); Buergenthal, Norris, and Shelton (note 46 above); P. Sieghart, AIDS and Human Rights - A UK Perspective (British Medical Association Foundation for AIDS, London, 1989).
136. L.F. Markenstein and R. Gocthart, Gezondbeidsrechtelijke aspecten van AIDS - testen op HIV (Vakgroep Gezondheidsrecht, Rijksuniversiteit Limburg, Maastricht, 1989), p. 18.
137. If this is not the case, one cannot speak about a legally binding agreement - cf. the national regulations of contract law in civil law provisions and jurisprudence.
138. It is usually required that research manuscripts describe the way test results will be stored and how the processed data will be presented, taking into consideration the "privacy" aspects of the subjects of the sample.
139. Cf. E. Deutch, "Das therapeutische Privileg des Arztes: Nichtanfklärung zugunsten des Patienten," Neue Juristische Wocheuzeitschrift, no. 24 (1980): 1305-1309; and L. Moutsopoulos, "Truth-telling to patients," Journal of Medicine and Law, no. 3 (1984): 239-251.
140. Roscam Abbing (note 126 above).
141. Cf. Medisch Tuchtcollege Amsterdam, case 1988/25 and case 1988/26, of 14 September 1987 (published in Tijdschrift voor gezondheldsrecht, May 1988). In both cases patients were told the result of an HIV antibodies test, although they had explicitly made clear that they did not want to receive such information independent of the test result. The Medical Disciplinary Court decided that the right to privacy had been violated. CF. Siegbart (note 135 above), and 1. Ravenslag, "HIV, een dilemma voor een arts?", Medisch contact, no. 2 (1989): 56.
142. Cf. Articles 2(1), 5(1), 7(1), 8(2), 9(2), 10(2) and 11(2) ECHR and Articles 6(2), 9(1), 12(3), 14(1), 14(2), 15(1), 17(1), 18(3), 19(3), 21 and 22(2) CCPR.
143. The right to privacy, as laid down in Article 17 CCPR, Article 8 ECHR, and Article 11 ACHR, embraces, among other things, an individual's particular identity, integrity, intimacy, autonomy, private communication, and sexuality (cf. Introduction).
144. W.E. Parmet, "Legal Rights and Communicable Discases: AIDS, the Police Power, and Individual Liberty," Journal of Health Politics, Policy and Law, vol. 14, no. 4 (1989): 741-771.
145. Cf. J. Martin, "Health Policy and the AlDS Epidemic: The Call for Public Health Intervention: The Use of Legislation for Prevention, Its Tasks and Limits," International Journal of Medicine and Law, vol. 8, no. 3 (1989): 234 ff.
146. Cf. The Lawless case, report of 19 December 1959, B.1 (1960/61), p. 408.
147. See also van Dijk and van Hoof (note 2 above), pp. 644 ff.
148. Cf. International Health Regulations (1969), 3rd. annotated ed. (WHO, Geneva, 1983).
149. Cf. H.J. Simon, "Onmenselijke behandeling en asiel," Nederlands Juristenblad (forthcoming, 1990).
150. Though these methods are not unrestricted and cannot be arbitrarily imposed, see Article 10 CCPR and Article 6 ECHR. See also the judgement of the Dutch Supreme Court, 2 July 1990, 1990/83 in Tijdsthrift woor gezondheidsrecht, no. 7 (1990), concerning the permissibility of certain invasive examination methods to measure the level of alcohol consumption as well as to determine if the suspect was implicated in a case of sexual abuse or not.
151. Cf. Case 986/61, Xv. Federal Republic of Germany, Yearbook V (1962), pp. 192 ff.
152. "Health Legislation and Ethics in the Field of AIDS and HIV Infection," report of an international consultation, Oslo, 26-29 April 1988 (World Health Organization Regional Office for Europe and the Directorate of Health, Norway), p. 17.
153. "AIDS and Human Rights," background document, International Consultation on AIDS and Human Rights, Geneva, 26-28 July 1989 (United Nations Centre for Human Rights and World Health Organization), p. 7 (HR/AIDS/1989/1).
154. "Such acts" means interferences inconsistent with Article 17.
155. For the full text of this General Comment see Nowak (note 20 above), pp. 892 ff.
156. For the "reasonable and objective criteria" test applied by the Human Rights Committee, cf. Nowak (note 20 above), pp. 503 ff.
157. Cf. G. Pinet, 15 the Law Fair to the Disabled?, WHO Regional Publications, European Series no. 29 (WHO, Copenhagen, 1990).
158. Cf. "Goed gekeurd?", rapport voorbereid door de Interdepartementale Werkgroep Aanstellingskeuringen (Den Haag/Rijswijk/Voorburg, 1990), pp. 4 ff.; "Le depistage du SIDA dans les professions à haute responsabilité," Le Monde, 4 February 1988, p. 12; and Wim Willems, De AIDS test bij annstellingskeuringen en verzekeringen (COMT, Leiden, 1990).
159. Cf. AIDS en particuliere verzekeringen (NCAB, Amsterdam, 1990) and Willems (note 158 above).
160. Depending on the legal system, such breaches of confidentiality can be considered as a breach of contract under civil law provisions, or a criminal offence under penal law provisions.
161. H.J.J. Leenen, Gezondheidsrecht, 2nd ed. (Samsom Uitgeverij, Alphen aan den Rijn/ Brussels, 1986), p. 44. However, in case of replacement of the treating physician, his/her licensed substitute is allowed to have access to the patient's files.
162. Cf. Gezondheidsraad, "Erfelijkheid: maatschappij en wetenschap," advies uitgebracht aan de Minister en Staatssecretaris van Welzijn, Volksgezondheid en Cultuur, no. 31/89, The Hague, 29 December 1989, pp. 99-100
163. Such breaches of privacy are offen foreseen by epidemiological laws which prescribe that physicians report cases of specific diseases to a central administrative organ.
164. Cf. Leenen (note 161 above), pp. 170-175.