The Swedish transplant acts: Sociological considerations on bodies and giving

Social Science and Medicine

Volumn 42, Issue 2, 1996, Pages 159-168

  Machado, Nora ^a  

^a UPPSALA UNIVERSITY   (Sweden)

Author keywords

Bodies; Law; Organ transplantation

Indexed keywords

HUMAN; HUMAN RIGHTS; LAW; LEGAL ASPECT; LIVING DONOR; MEDICAL ETHICS; MEDICAL RESEARCH; ORGAN TRANSPLANTATION; REVIEW; SWEDEN;

EID: 0030060247     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/0277-9536(95)00096-8     Document Type: Article

References (51)

1. For those cases where the extraction of biological material would be required for medical purposes other than clinical transplantation (e.g. experimentation and fabrication of drugs), the law delegates the right to give authorization to the Board of Health and Welfare. Transplant Act 1975, p. 190, Svea Rikes Lag, 1990.
2. In 1932 a decree (abolished 1973) regulated the uses of corpses for anatomical studies of individuals buried with the aid of public funds, those who died in mental hospitals, sanatoriums, prisons and asylums. Socialdepartamentets promemoria med förslag till lag om transplantationer och sjukhusobduktioner. Social Department Series. DsS 1974:5:81 (Publications of The Government Office).
3. The transition from presumption of consent to non-presumed consent was in part connected to the introduction of new criterion for establishing death (see Ref. [4]), in part to ameliorate possible public suspicion or fear of organ harvesting and to assure the sustained legitimacy and authority of the medical profession. In addition, there was during 1980s in Sweden a tendency to strengthen individual rights and integrity. Burns T. R. The issue of consent in Swedish discourse. In preparation. 1995.
4. In 1987 legislation was passed defining total cerebral infarction as the criterion of death: the "Law about the Occurrence of Death". This law improved the performance of kidney transplants and opened up the possibility of performing heart transplantations in Sweden. The law does not in principle touch the question of rights. However, the law about death was understood by many to be closely connected to the Transplant Act, but they were dealt with separately in the preparation for the legislation and in the legislative process. Brante T and Hallberg M. Koatroversen om dödsbegreppet. VEST 10-11. 1989. Debates about the introduction of a legal criteria of death in Sweden started already in 1958 in connection with the first Transplant Act. Public and parliamentary controversies about whether or not to legislate a brain-death concept went on for almost 30 years. Major concerns were the connection between brain-death and opportunities for organ transplantation, questions about the reliability of determination of death by neurological criteria, a possible negative reaction from the public in the turbulent 1970s, and the lack of parliamentary consensus. As one member of Parliament, former minister of Health put it, "We do not want to give the public the impression that one party is for one type of concept of death and another party stands for another, that a change of political climate lead to changes in the constitutional laws. There has been diverse opinions inside the committee." Mihailkalis D. Legislating Death: Sociolegal Studies of the Brain-death Controversy in Sweden. Acta Uppsaliensis, Uppsala, 1995. The timely solution began to take shape already in 1982, when the Minister of Health launched two separate governmental inquiries, one to analyze the pros and cons of legally establishing a criteria of death (eventually brain-death), and the other inquiry to study eventual reforms of the Transplant Act. Each inquiry was carried out independently of the other. The Minister of Health was overtly explicitly about this: the inquiry about eventual modifications to the current death criteria was to leave aside any considerations or consequences for transplantation. The rationale for this measure was explicitly formulated by a member of the Parliament: "We want to maintain a distinction between political decisions and medical decisions" (see Mihailakis above). The issue was settled in 1987 when the brain death law was approved, by considering the cessation of the functions of the entire brain as equivalent to death. At that time, as discussed in the text, an amendment to the 1975 Transplantation Act was passed.
5. Amendment introduced to the Transplant Act 1987. Statens Författningssamling SFS 1987:270.
6. An exception to this is made for the donation of bodies to university hospitals for purposes of medical education. At this day, this is done through a testament-like procedure.
7. Transplantation. Betänkande av Transplantationsutredningen. SOU 1989:98, p. 173. Stockholm, 1989 (SOU = Swedish Royal Committee Report).
8. External renewable parts of the body such as nails and hair can be sold by the person to which the parts belong and thus are not considered in the law.
9. It has been correctly suggested in my view that the metaphor that best expresses the structure of living donation is 'gift exchange' where the organ is conceptualized as gift (as opposed to commodity). 'Gift' in this context means the embodied expression of a kin related reciprocity system, where the relationship is reaffirmed in ongoing interactions. Mauss M. The Gift: Forms and Functions of Exchange at Archaic Societies. Cohen and West, London, 1954; Fox R. and Swazey J. The Courage to Fail. A Social View of Organ Transplants and Dialysis. University of Chicago Press, Chicago, 1974.
10. It has been correctly suggested in my view that the metaphor that best expresses the structure of living donation is 'gift exchange' where the organ is conceptualized as gift (as opposed to commodity). 'Gift' in this context means the embodied expression of a kin related reciprocity system, where the relationship is reaffirmed in ongoing interactions. Mauss M. The Gift: Forms and Functions of Exchange at Archaic Societies. Cohen and West, London, 1954; Fox R. and Swazey J. The Courage to Fail. A Social View of Organ Transplants and Dialysis. University of Chicago Press, Chicago, 1974.
11. Peters D. A. Protecting autonomy in organ procurement procedures: some overlooked issues. Milbank Q. 64, 2, 1986.
12. The concept of 'public duty' that has characterized the Swedish legislation in these matters has to be understood in the context of the Swedish health care system, contrasting to the organisation of the U.S.A. health care that in the particular case of organ and tissue donations endorse a more 'individualistic' transfer of 'gifts of life' its legislation Uniform Anatomical Gift Act (1968, 1987). U.S.A. Federal Legislation.
13. This ambivalent situation has been recognized by transplantation surgeons when interviewed (in the media), where the importance of each individual reaching a decision about donation and not burdening the relatives is stressed.
14. Living donations are well over 20% of all donations [7] (p. 57). (In Norway, with close cultural ties with Sweden, living donations are close to 50%.)
15. An amendment was introduced in 1988 stating that the physician requesting an organ donation must assure that the giver understands the implications of the procedure. Statens Författningssamiling SFS 1988:1275.
16. The opinion of children for medical procedures is generally taken into full consideration around puberty.
17. The text of the Act explicitly states that authorization is only to be granted if substantial reasons (synnerliga skäl) justify it. The older the minor, the more he has to say about any procedures on himself.
18. Next-of-kin: refers to "someone that has been especially close to the deceased" [7] (pp. 29, 158, 276). In practice the next-of-kin refers to the spouse, children, parents and siblings.
19. This practice of 'tissue procurement' is based on a policy of presumed consent regarding the deceased.
20. As minor parts are also classified parts such as corneas, even if this extraction implies the extraction of the entire eye. This fact was noticed by the Consultory Committee on Ethical Issues of the Board of Health, but no measures were taken due to the obstacle that authorization requirements would impose on medical replacement of corneas and the great need for such operations [7] (p. 196).
21. Modern legislation is legitimised in part through internal mechanisms of formal rationality, such as new laws having their foundation in constitutional laws and previous legislation. In the Constitution (RF), the protection of bodily integrity is stated but can be overruled by other Constitutional norms and laws of slower structural level since the latter are supposed to implement the former. This entails a certain type of social rationality. Burns T. R. and Flam H. The Shaping of Social Organization. Sage, London, 1987.
22. 2 undamaged lung tissue, 5 × 5 cm pieces of veins from hands,...eye, hypophysis [7] (p. 197).
23. Legal Aspects of Transplantation. Some Views on the Definition of Death (7). A Report on Transplantation and the Definition of Death. Swedish National Board of Health and Welfare, Stockholm, 1969.
24. This is practical in the sense of maintaining an established practice, for example, transplanting corneas or minor parts of tissue, or extracting them for medical research purposes, that would have been obstructed by the procedure of securing written consent from the donors.
25. Machado N. and Burns T. R. The Body in the Law. Working Paper. Department of Sociology, Uppsala University, 1992; Heclo H. 1983 Policy and Politics in Sweden. Temple University Press, Philadelphia, 1987.
26. Machado N. and Burns T. R. The Body in the Law. Working Paper. Department of Sociology, Uppsala University, 1992; Heclo H. 1983 Policy and Politics in Sweden. Temple University Press, Philadelphia, 1987.
27. The concept of pragmatic principalism, as introduced by Heclo [24], is not related to neologistic principalism in bioethics, that is the application of general ethical principles and rules to illuminate and resolve moral problems. Beauchamp T. L. and Childress J. F. Principles of Biomedical Ethics. Oxford University Press, New York, 1979; DuBose E. R., Hamel R. P. and O'Conell L. J. (Eds) A Matter of Principles: Ferment in Bioethics. Trinity Press International, Valley Forge, PN, 1994.
28. The concept of pragmatic principalism, as introduced by Heclo [24], is not related to neologistic principalism in bioethics, that is the application of general ethical principles and rules to illuminate and resolve moral problems. Beauchamp T. L. and Childress J. F. Principles of Biomedical Ethics. Oxford University Press, New York, 1979; DuBose E. R., Hamel R. P. and O'Conell L. J. (Eds) A Matter of Principles: Ferment in Bioethics. Trinity Press International, Valley Forge, PN, 1994.
29. This conception differs from, for example from the Confucian concept of personhood. "The basic unit of identity is the family not the individual, and the person is conceived of as always in transaction with others. The body is thus not something whose desires are in constant conflict with the social order but [it is] the agent of the family". Kirmayer L. Mind and body as metaphors: hidden values in biomedicine. In Biomedicine Examined (Edited by Lock M. and Gordon D. R.). Kluwer Academic Publishers, 1988. Thus, the legal person need not to be identical with the body since this, being a conceptual entity, can technically even reside in, for example, an enterprise.
30. This status differential, but in a lesser degree is acknowledged in the hospital praxis when the relatives often act as a representatives of unconscious patients.
31. A further aspect to consider in the Act relates to the person's social relationships. The rights of the dead person are extended to the persons who constitute her closest social ties, since they act as witnesses (for instance of the will of the deceased) and also as her representatives (action on the basis of some type of ownership right is a legal possibility rejected in the legislation [8]). Even if the application of 'kin rights' has had a specific rationality also related to the 'need of organs', the revival of its legal role is an ironic turnabout in a modern legislation based on individual citizen rights and duties. To legally acknowledge the role of the next-of-kin deviates somewhat from established Swedish conceptions, where the legally defined citizen has been, and still is, the focus of legislative measures (the collective as counterpart). The official role of the family and the relatives in the Swedish welfare, has had (and still has) a secondary role in social policies. Until recently it was the State (understood as the collective) and not the family that assured citizens employment or at least a minimum livelihood, good health care, day care facilities for children, assistance to elderly etc.
32. Feher M., Nadaff R. and Tazi N. Fragments for a History of the Body, Vols 1-3. Zone, New York, 1989.
33. The 6§ paragraph of the Swedish Constitutional Code (RF:2) establishes the citizens' right to bodily integrity from state coercion, such as the use of physical force, bodily search, medical actions. [Exceptions are given by (a) other laws or equivalent regulations and (b) emergency, in 12§]. The concept of consent is central in defining a transgression to this paragraph. Consent and coercion are considered mutually exclusive: if consent is given then no coercion is exerted. Sjölenius B. Hälso och Sjukvårds rätt. Studentlitteratur, Lund, 1989 . Implicitly, the consenting person has sovereign rights over her body. However, this is that dear. For example hi the Criminal Code (BrB 1982:316 1§) female circumcision is forbidden independently of of the woman's consent. Also, the Criminal Code penalizes anyone causing death or considerable injury or disease, or seriously endangering another person even when there is no overt intention of committing crime. (BrB, Chapt 3 7§ 8§ 9§).
34. A body (living or dead) is conceptualized in the law as nobody's object and no-one's-property (res nulius), and thus a person's corpse can not be bequeathed in a testament will, or sold. The body occupies a legally undefined place as the physical enactment of the actor's rational intentions. The increasing use of body organs/tissue in medical therapy sanctions a view of human body parts as useful 'matter', were simultaneously in the requirement of handling corpses with 'piety', the sacredness of the dead body is officially underscored [7, p. 70]. The gap in the denotation of bodies/organs for transplantation, in the patient-centered medical practice and the citizen-centered discourse of the legal tradition, entails structural tensions. (The opposition between body as person and body as thing, can be analyzed departing from a matrix with two dimensions, renewability and size of parts [26].)
35. Inger G. Rätten över liv och över egen kropp. Kungl. Humanistiska Vetenskaps-Samfundet i Uppsala, Årsbok 1985. Annales Societatis Literarium Humaniorum Regiae Upsaliensis, 1985.
36. It is interesting to compare the discourses in two reports about sterilization from the Swedish Demographic Committee in 1936 respective 1974 concerning bodily integrity. While in the former the idea that every person would freely decide over her's body, is regarded as an extremely individualistic conception, in the latter is stated that a person has in principle the right to decide over his or hers body. Betänkande angående sterilisering SOU 1936/46:189. Stockholm. Sterilisering: Betänkande av steriliserings-utredningen SOU 1974/31:25, Stockholm. The period after the war entailed a change of attitudes towards individual (bodily) rights. One of the first public expressions of this new attitude was expressed by Olof Palme in 1960 address to the Parliament about the Sterilization Act in 1960: "Societal right recedes on behalf of the individual right..." Broberg. G. and Tyden M. Oönskade i Folkhemmet: rashygien och sterilisation i Sverige, p. 174, 189. Gidlunds, 1991.
37. It is interesting to compare the discourses in two reports about sterilization from the Swedish Demographic Committee in 1936 respective 1974 concerning bodily integrity. While in the former the idea that every person would freely decide over her's body, is regarded as an extremely individualistic conception, in the latter is stated that a person has in principle the right to decide over his or hers body. Betänkande angående sterilisering SOU 1936/46:189. Stockholm. Sterilisering: Betänkande av steriliserings-utredningen SOU 1974/31:25, Stockholm. The period after the war entailed a change of attitudes towards individual (bodily) rights. One of the first public expressions of this new attitude was expressed by Olof Palme in 1960 address to the Parliament about the Sterilization Act in 1960: "Societal right recedes on behalf of the individual right..." Broberg. G. and Tyden M. Oönskade i Folkhemmet: rashygien och sterilisation i Sverige, p. 174, 189. Gidlunds, 1991.
38. It is interesting to compare the discourses in two reports about sterilization from the Swedish Demographic Committee in 1936 respective 1974 concerning bodily integrity. While in the former the idea that every person would freely decide over her's body, is regarded as an extremely individualistic conception, in the latter is stated that a person has in principle the right to decide over his or hers body. Betänkande angående sterilisering SOU 1936/46:189. Stockholm. Sterilisering: Betänkande av steriliserings-utredningen SOU 1974/31:25, Stockholm. The period after the war entailed a change of attitudes towards individual (bodily) rights. One of the first public expressions of this new attitude was expressed by Olof Palme in 1960 address to the Parliament about the Sterilization Act in 1960: "Societal right recedes on behalf of the individual right..." Broberg. G. and Tyden M. Oönskade i Folkhemmet: rashygien och sterilisation i Sverige, p. 174, 189. Gidlunds, 1991.
39. Thomas G., Meyer J., Ramirez F. and Boli J. Institutional Structure. Sage, New York, 1987
40. This conception of death, based in the total and irreversible failure of brain functions, depended on to the introduction of new techniques in medicine strengthening a 'scientific-medical' view of the person.
41. Conclusion based on a survey conducted by Gäbel and Lindskoug in Malmö, 1986-1987. Gäbe) H. and Lindskoug K. Svensk enkät om organdonation och transplantation: två tredjedelar redo att ge organ. Läkartidningen 86, 3681, 1989.
42. The case of the cornea is illuminating [22] since its extraction was allowed without any particular consent of the donor. An article in a newspaper 1985 took up the question of the sale of corneas abroad, and disclosed that the extraction of corneas implied the extraction of an whole organ (the eye). This brought about an examination of these extraction practices by the Justice Ombudsman and the commission for ethical matters of the Board of Health. However, the issue was put temporarily aside because of the possible negative implications for cornea transplants with recommendations to be analyzed in connection with eventual reformulations of the Act.
43. Kroppen efter döden. Slutbetänkande av transplantations-utredningen. SOU 1992:16. Stockholm, 1992.
44. Lågrådsremiss. Transplantationer och Obduktioner. m.m., Stockholm 16 February 1995.
45. This term replaces the previous term 'disabled'.
46. Note that this Act does not refer to medical actions on patients, which is regulated by the Health Care Act, or deceased, which is regulated by the Autopsy Act.
47. The clause restricting living donation to the next of kin in the proposed amendment would be applied solely to nonrenewable biological material.
48. In the proposed Act, enduring emotional bonds are to a certain extent recognized as legitimate channels of giving. This implies a recognition of cohabitants as next-of-kin.
49. Adams R. K. Live organ donors and informed consent. A difficult minuet. J. Legal Med. 8, 556, 1987.
50. The possible injury to the donor is underscored in the 1989 and 1992 inquiries [7, p. 260; 38, p. 232].
51. Since presumed consent departs from the notion that to donate is the general norm, a refusal to follow a norm generally viewed as an act of generosity, becomes a negative deviation from that norm. On the contrary, as non-presumed consent departs from the notion that to donate is not the general norm, an action of not following that norm becomes an altruistic action on the part of the donor. In other words, the same action acquires in one case a negative value, and in the other a positive one as a result of shifting the context of what is regarded as normality. 48. The importance of some educational efforts regarding health care personnel in this matter is generally considered. Additionally, the Proposal is concerned about psychological aspects of the situation of the personnel involved in transplantation, and that this should be attended to. For further analysis of this question see Machado N. The Organizational Theory of Cognitive Dissonance. Department of Sociology, University of Uppsala, 1995.