EVERT VAN LEEUWEN AND CEES HERTOGH
THE RIGHT TO GENETIC INFORMATION: SOME REFLECTIONS ON DUTCH DEVELOPMENTS
Key Words: autonomy, freedom of choice, justice, responsibility, right not to know. INTRODUCTION
Recent developments in clinical genetics have raised a variety of responses in Western Europe. Different value systems as well as the remembrance of the abuse of medical science during World War II evoked serious doubts concerning the question whether these developments should be seen as a specimen of medical progress. In the Netherlands, genetic engineering and the critical evaluation of scientific research are being extensively discussed. Problems concerning the respect of autonomy, the confidentiality of data, the right to access of information by third parties, and the right not to know are the main ethical issues in this debate. In this paper we will survey these developments in the ethical debate. But before beginning the survey, some preliminary information concerning the Dutch organization of clinical genetics is given. Most genetic disorders are diagnosed and treated in one of the eight centers of clinical genetics. These centers are well-equipped and linked to academic institutes. It is estimated that 7 to 10 Evert van Leeuwen, Ph.D. Dept. of Philosophy and Medical Ethics, Faculty of Medicine, Free University, Van der Boechorststr 7,1081 BT Amsterdam, The Netherlands. Cees M.P.M. Hertogh. M.D. Ph.D. Dept. of Philosophy and Medical Ethics, Faculty of Medicine, Free University, Van der Boechorststr 7, 1081 BT Amsterdam. Janskliniek, Stichting Hervonnde Diakonale Huizen, Ridderstr. 32 2011 RS Haarlem, The Netherlands. The Journal of Medicine and Philosophy 17: 381-393,1992. © 1992 Kluwer Academic Publishers. Printed in the Netherlands.
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ABSTRACT. New developments in genetics are rapidly spreading over the Western World. The standards of clinical practice differ however according to local value- and health-care systems. In this article a short survey is given of Dutch developments in this field. An effort is made to explain the philosophical and ethical background of Dutch policy by concentrating on autonomy, responsibility and the right not to know.
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II. ETHICS AND GENETICS
To understand the Dutch way of dealing with bioethical problems, the following remarks have to be borne in mind. Firstly, ethical issues are not considered to belong to the exclusive domain of some experts. They are thoroughly discussed in society at large by groups with various interests and perspectives. The media, the churches, the political parties, etc. all take part in the general debate. Health care professionals, ethicists, lawyers and patientunions deliberate at meetings, conferences and in special commissions about the main issues. Secondly, the variegated value-
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thousand full grown babies (4-6%) are born each year with an inborn or genetic disorder. At least 32% of early deaths in the first year of life is due to those disorders. Genetic counseling with respect to these disorders has developed rapidly in recent years and is, since 1985, covered by health insurance including coverage for social and psychological support. In 1986, prenatal testing was performed on 5000 pregnant women. Approximately 4% of the fetuses tested had disorders which led to the choice for abortion. The moral issues which are raised by the developments of clinical genetics depend on the kind of disease involved. The right not to know is, for instance, particularly important in the case of late onset genetic diseases, such as Huntington's Disease, which is autosomal dominant. People who want an exclusion-test of their offspring can ask for a non-disclosure of their own status, based on the right not to know (Hertogh et al., 1990). These and other moral problems are mostly dealt with within the contacts between counselor and counselee. The information is regarded as absolutely private while the consequences of the testing, such as the abortion of a fetus, are separated from the counseling-procedure. The storage of information is subjected to the law of registration of personal data, which must protect the privacy of people. All the measures which should be taken at a more general level of society in order to regulate the public consequences of genetic counseling and screening, are discussed by a Commission of the Dutch Health Council. This governmental advisory board published an influential report in December 1989. The contents of this report will be discussed in the following survey. We will concentrate on the questions regarding late onset of genetic diseases and diseases without a proper blueprint for therapy.
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orientations result in different conceptions of the issues at stake. In the Netherlands, an important tradition of "Gesinnungsethik" still exists as in Germany. This ethics focusses primarily on the meaning of human life and the subsequent obligations in personal existence. The various shapes of these conceptions are acknowledged in society by stressing the fundamental respect for autonomy, i.e., the freedom and capacity to choose between different alternatives. This freedom is of course not an ethical absolute as it has its legal and social limits. But within these limits people are allowed to choose their own way of life, according to their philosophy and religion. Freedom of choice is also a primary value in bioethics. Policies dealing with the introduction of new techniques, like those of genetic screening and counseling, are usually based on the principle of mutual respect for autonomy. In some cases it might however be difficult to decide what follows from this principle. The Commission of the Dutch Health Council allows for different opinions with respect to the question to what extent a genetic counselor may give advice on request (Gezondheidsraad, 1989, p. 78-79). Some members of the commission reject such advice on request. In their view, the counselor is never able to determine the best choice fitting the beliefs and the particular situation of the counselee. According to others, such advice is acceptable in exceptional cases, provided that it is explicitly stated as being the personal opinion of the counselor. Both views are considered to be compatible with a principle of non-directivity - derived from the principle of respect for autonomy - stating that the counselor should not interfere professionally with the philosophical and ethical beliefs of the counselee (Gezondheidsraad, 1989, p. 77). The advice should therefore not favor one of the possible options. In the opinion of the Dutch Health Council, the principle of respect for autonomy implies that the counselee has a right to know all the data which are of interest to him, including the gender of the foetus in the case of prenatal testing. Retaining such information has to be justified on therapeutic grounds and not by moral conviction (Gezondheidsraad, 1989, p. 97). The same principle gives the counselee a right not to know. The commission of the Dutch Health Council acknowledges such a right as based on the constitutional right to privacy (Gezondheidsraad, 1989, pp. 97-98). However, the right not to know is not an ethical absolute. If other people are involved, for instance relatives or children, a
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conflict of interests might arise. In these highly exceptional cases, in which other people might be seriously harmed and the counselor finds himself in a conflict of duties, one might ignore the right not to know (Gezondheidsraad, 1989, pp. 105-106). The respect for autonomy has a deeper source in the endorsement of humanity. This recognition is also one of the foundations of the Dutch health-insurance system, both in public health insurance and in private health insurance. Although the rates sometimes differentiate between health-conditions and foreseen illnesses, a solidarity-principle governs the system in order to guarantee everyone basic health-care facilities. The principle of solidarity and the right of equal access to basic health care facilities reflect strong religious and political intuitions. They are usually considered as the social and economic prerogative of the freedom to choose and the right not to know. The possibility to choose between having full genetic information or abstaining from it follows from the health-insurance system, in which personal choices are financially neutralized by the aggregational counting of risks. This financial neutrality makes it at present unnecessary for the government to become a partner in the ethical discussions. Public measures will have to account for the principle of solidarity providing the care of patients who suffer from incurable diseases. The fact that genetic tests have become available does not alter anything in this respect: One does not choose his own genetic make-up. Respect for autonomy is therefore mostly balanced against the immediate consequences to others and not against economic values. As a consequence, the ethical issues concerning the personal options in genetic counseling remain primarily confined to the physician-patient relationship. Governmental or legal ruling is considered only if problems cannot be solved otherwise. In rare cases, if the problems cannot be reasonably solved, people are prepared to,go to court or parliament in order to demand their presumed rights. But in general it is believed that the dictum of a judge cannot settle anybody's problems. 'Wrongful life' or 'wrongful birth' cases have, for instance, not taken place in the Netherlands, although they are perhaps feasible under Dutch law (Gezondheidsraad, 1989; Gevers & Leenen, 1986). The reticence concerning the role of society, including the law, is one of the main differences between Dutch traditions in dealing with ethical problems and for example those in Anglo-Saxon countries, like
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the USA. Freedom from state interference in matters of personal life is still highly esteemed in the Netherlands. HI. FUTURE DEVELOPMENTS IN GENETIC COUNSELING AND SCREENING Downloaded from http://jmp.oxfordjournals.org/ at Bibliotheek TU Delft on March 20, 2015
The social consequences of the developments in genetic screening and testing do not only concern the rights of the individual. At the level of society, for instance where problems of allocation and insurance-policy are concerned, the principles of justice and equity are also important. Considerations on these levels might in the long run influence the situation of micro-ethics. In the Netherlands, the government strongly appeals to social responsibility in all kinds of public issues. Freedom and autonomy have their counterpart in social obligations, so they are usually stated by politicians. Therefore, some expect that the emphasis will move away from respect for autonomy toward social obligations and liabilities, as advances continue to be made in genetic screening and counseling. The Steering Committee on Future Health Scenarios, for instance, reported on those probable changes in 1988. The Committee developed two scenarios, one based on the principle of respect for autonomy, another on the general interests of society at large (Steering Committee, 1988, p. 78). The latter scenario mentions growing social pressure on those who are at risk to undergo genetic testing. It is calculated that the combined activities of diagnostic services, genetic counseling, prenatal testing and the screening of newborns and carriers would be highly cost-effective. The large savings resulting from testing programmes could therefore change the attitude of tolerance towards those who are at risk for severely handicapping diseases (Steering Committee, 1988, pp. 73-78). At present this scenario is not a realistic one. Health-insurance has always covered risks which resulted from genetic transmission and the availability of tests does not alter anything if there is no proper blueprint for therapy. The only possible change which might be expected regards the differentiation of insurance rates in private healthcare, but this is probably not feasible under Dutch law. Things differ in the area of risk-insurance as a complement of social security. These insurances are generally not considered to fulfil basic needs, but are seen as additional investments. Life insurances and disability insurances are business transactions, based on the (Dutch) Commercial Code. Before making a deal, the
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insurance companies have the legal right to demand all available information, including the knowledge resulting from previous genetic testing. Available genetic information, obtained previously by the person, should in their opinion be disclosed within reasonable limits. Such limits regard the interests of both parties and the kind of agreement at stake. Further information should be obtained by medical examination, sometimes including an HFV-test. The ethical problems involved in obligatory HIVtesting show a close analogy with the testing on genetic diseases. Therefore, policies are being developed in which the two issues are taken together. Several professional and governmental organizations have commissions at work to settle the ethical problems involved in these and related issues. The Commission of the Dutch Health Council has taken a stand in the case of medical examination: it rejected any kind of mandatory testing on genetic diseases on the grounds that such force is incompatible with the constitutional right to privacy. With respect to medical examinations, in order to get insurance or a job, a legal interdiction of direct genetic testing is pleaded, while people should remain free to refuse to give available information within reasonable limits (Gezondheidsraad, 1989, pp. 157-167). The insurers have stated in reply that they are willing to accept a release of the obligation to inform for a trial period of five years in the case of testing for late onset of genetic disease. The covering limits are the same for HTV-testing. The Minister of Justice has, in turn, made public that he is prepared to follow this agreement for the suggested period (Ministerie van Justitie, 1990). Together these developments exemplify the manner in which the commitment to the constitutional right to privacy and the growing possibilities of obtaining information about genetic diseases are matched. The fundamental belief which governs the Dutch ethical policy is based on the right of every individual to shape his own life. The extent to which this belief is compatible with the principle of respect for autonomy might be questioned. Following the recommendations of the Dutch Health Council and subsequent reports, an individual may conclude that the best option to avoid any difficulty with social and private security is to have no genetic information at all. The right not to know gives the best chances on being well-insured. That option is, however, not always in the interest of the individual, nor in that of his relatives, including offspring, nor in that of society. The question resulting
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from this survey therefore is: Do the principles of medical ethics, like autonomy and justice, not demand some obligation to inform yourself and others about your genetic status within the limits of reason, thus excluding a right not to know?
The principle of respect for autonomy has its main objective in refraining from interfering with, or from attempts to interfere with, the autonomous choices and actions of others. People are allowed to act in a way which is not subjected to the controlling constraints of others. As such, the principle implies the obligation of informed consent in the physician-patient relationship and it gives the patient the right to full disclosure of information regarding his health condition. In Justice Cardozo's famous statement: "Every human being of adult years and sound mind has a right to determine what will be done with his own body" (Beauchamp and Childress, 1989, p. 73). In bioethics, 'responsibility7 is usually considered to be a secondary notion and not a primary principle. To be responsible and to act in a responsible way means: to be able to make autonomous choices between alternatives, to be willing to gain knowledge of the consequences and to be prepared to act in a consistent manner with respect to the consequences of a choice. The right not to know has to be related to this notion of responsibility. Does everybody have the right not to be informed about events which will possibly happen in his future life, if that information is based on physical evidence which lies beyond his will and power? If no reasonable action is possible to avoid such possible events, the information about those events may be considered as a constraint on the freedom to make autonomous choices. It can therefore be argued that the choice to have such information must in any case be taken autonomously, without any controlling constraint. To decide either way is a private matter in which no one is allowed to interfere. The arguments which favor informed consent as an affirmative obligation of health-care professionals in a fiduciary relationship, also favor in this way the acceptance of a right not to know in genetic counseling (Kuitert, 1988; De Wert & De Wachter 1990, p. 153-157). One should not be forced to give up his autonomy and accept constraints on his personal life and future by providing information to others.
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IV. AUTONOMY, RESPONSIBILITY, AND THE RIGHT NOT TO KNOW
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Society has to respect the information as fiduciary and personal, in accordance with the constitutional right to privacy. But a preliminary question is not sufficiently answered by such a line of reasoning. Can the choice to have or to refuse genetic information truly be based on autonomy? Although autonomy fosters freedom of decision, it does not imply unqualified liberty to choose. One should act on reasonable grounds. Kant's concept of autonomy and Mill's concept of an acting individual both suggest that someone might be said to be able to act autonomously only when in possession of all possible information. If information is explicitly denied for personal or social reasons, it might be concluded that the person in question lives apparently under a burden of stress or social threat, and therefore does not act autonomously at all. The threat of the possible contents of the information and the inability to cope with this threat, deprive someone of his autonomy and accordingly of his responsibility. The right not to know is then only defendable as an act of beneficence or non-maleficence towards a person who is not able to act in an autonomous or responsible manner. The freedom of choice between having and refusing such knowledge can in this line of argument not be based on the principle of respect for autonomy, but must be considered as an act of beneficence granted to someone in order to restore his autonomy in time (Yarborough et ah, 1989). Both lines of argument are present in Dutch ethical literature concerning the freedom or duty to undergo genetic counseling, when someone knows that he has an a priori risk (De Wert & de Wachter 1990, pp. 145-165). The same problems hold with respect to genetic screening. Development of genetic screening may result in procedures to which people are submitted who do not know that they have an a priori risk. In these cases the question whether or not one can decide autonomously to obtain information, is even more complicated. It might for instance not even be sure whether someone can benefit at all from the information obtained. If such benefits are not predictable, it could be considered supererogatory to have such a test, while in other cases it might even be considered a use of illicit force and an abuse of medicine (Kuitert, 1988). However, the information might be considered as necessary to every individual who wants to deal in a reasonable way with the choices about his future life. In that case refraining from genetic evidence would again be irrational.
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With respect to genetic screening and counseling, the principle of respect for autonomy does not seem to yield a decisive argument with regard to the acceptance or rejection of the right not to know. The problem is raised by the principle itself. Autonomy signifies that all normal people, of sound mind and adult years, are equally independent. As such it is a formal notion by which the freedom to choose and the social obligations towards fellowmen are to be developed, including a concept of justice by which people who act autonomously are considered equal. Principles of distributive justice and notions of fairness concerning factual inequality may then follow. But the information which is obtained in genetic testing makes persons unequal in a different sense: it gives them a kind of pre-determined start in which they remain dependent. Scientific knowledge may force them to give up a part of their freedom, not because of some categorical imperative discerned by autonomous reasoning in the soundness of mind, but because of a spell which is cast upon their physical make-up. Respect for autonomy does not foster freedom in that situation, it demands submittance to information. Instead of liberating people and making them able to shape their lives according to their own philosophy and religion, medical knowledge thus becomes a social force in the distribution of inequality. This will first of all happen in contractual relationships. Companies which sell insurance do so on the basis of mutual respect for autonomy. This means that both parties must be able to judge freely whether or not the contract is acceptable. Life-insurance, for instance, can be said to foster the common interests of people who have equal chances to survive a certain period when they enter the contract (Salomons, 1987). In such a situation, it would simply be nonsensical to grant someone a right not to know his real risk for a late onset disease. That would come down to concealing the inequality in chances of survival, thus damaging the interests of others. In these relationships the inequality and not the equality is of major significance. The veil of ignorance about future events is lifted as far as possible. The premisses of a (Rawlsian) theory of justice therefore simply do not seem to hold. They only grant a right to basic health-care facilities on the basis of a principle of (subsidizing) solidarity. Besides such a right to a decent minimum of health care, all other policies will have to consider the inequality as a fact (Soeteman, 1989). The substantial inequality which results from predictive genetic tests is therefore hard to
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overcome by a combination of the principles of respect for autonomy and of distributive justice, thereby leaving the people concerned in great distress and moral uncertainty. Is there a way out of the problem? To answer this question we have to remember that the combined principles of respect for autonomy and distributive justice are abstracted from specific situations, i.e. informed consent and the right of equal access to health-care facilities. Medical science and practice should in general not interfere with the right to self-determination, whereas society has to provide everybody with a fair share in health-care facilities. The basic intuition underlying these principles concerns the meaning of human life. This meaning should not be subjected to medical reasoning. Stating that everybody has a solemn right to self-determination, presupposes the mutual recognition of snared humanity. In this perspective, responsibility means that every human being has to answer some questions with respect to the meaning of his personal life in relation to others. As such the intuition focusses also on the differences between human beings in their choice of a life-perspective, or their ways of being not equal. The principles of respect for autonomy and of distributive justice supersede this inequality by stating a formal equivalence of human beings, an equality in value. The factual differences are acknowledged and respected by considering the equivalence as the moral notion which governs the institutional practice. Although we know that human beings are not equal, we think in terms of equality for moral reasons. The notion of moral equivalence is at stake where differences in genetic make-up are concerned. Besides other differences, people appear to differ in their genetic constitution and have accordingly different life-spans. This difference does not constitute a new fact, it has been known for ages. The differences are only reflected in genetic formulae. The substantial character of the information however does not in itself differ from other substantial evidence about the unequal starting points in life, concerning, for example, social or educational backgrounds. If the principles of respect for autonomy and distributive justice should hold with regard to the latter kinds of substantial inequalities, thereby granting each individual his own chance for the pursuit of happiness, there is no reason why they would not hold for genetic inequalities as well. This implies that, as far as genetic medicine is concerned, a right not to know should be granted to everybody, thus giving
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everybody an equal chance to live according to his own capabilities and religious and philosophical beliefs. Only in this way it can be prevented that medical practice becomes a threat to people. A distribution of goods by means of medical science poses such a threat to the autonomy of certain people, because it will inevitably result in their social invalidation and turn them into some kind of outcast (Foucault, 1982, p. 232). Especially the latter threat is discussed in Europe and in the Netherlands. An unrestricted right not to know, as a human right to resist an evil, encompassing medical science, is claimed (Burnier, 1990). Sometimes even outbursts of irrational resistance against medicine and bio-ethics occur. These protests have to be met by arguing that the institutional practice of medicine has been created in western society in order to serve the health of everybody and to restore autonomy and freedom in cases where the so-called 'natural lottery7 results in a life of pain and misery. With this in mind, the inequalities between different people become substantial facts in every kind of medical practice. They have to be dealt with in the interest of the patient, respecting his values and life-perspective. The right not to know can only be based on this respect for human life in all its varieties (Canguilhem, 1978, pp. 171-179). A patient can demand this right, and sometimes the physician acknowledges it in an act of beneficence. In these cases, the right not to know is restricted to the benefit of the patient and it should have no harmful effect on others. Is the beneficent act also extendable to society as a whole? One might argue in favor of this, by saying that all medical information belongs in the end to the realm of privacy. However, this is not feasible with respect to the practice of medical examinations. A limited right not to know, based on the principle that everybody should have a fair chance in social life, can nevertheless be properly defended. Firstly because genetic information delivers probabilities. It should therefore not be interpreted as some kind of determination (van Leeuwen, 1990). Secondly, all human beings differ and have different chances in live. To take genetic risks into account will probably result in the exclusion of some groups from society, an exclusion which could be unfair compared to the risks which people normally take. The question whether or not a right not to know can be answered by using the principle of respect for autonomy, has to be answered in this
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REFERENCES Beauchamp, T. L. and Childress, J. R: 1989, Principles of Biomedical Ethics (3rd ed.), Oxford University Press, New York. Burnier, A.: 1990, De achtste scheppingsdag. Essays 1987-1990, Meulenhoff, Amsterdam. Canguilhem, G.: 1978, On the Normal and the Pathological, D. Reidel Publishing Company, Dordrecht/Boston/London. Foucault, M.: 1982, 'On the genealogy of ethics: an overview of work in progress' in H. L. Dreyfus H. L. and P. Rabinow, (ed.), Michel Foucault, Beyond Structuralism and Hermeneutics, University of Chicago Press, Chicago. Gevers, J. K. M. and Leenen, H. J. J.: 1986, Rechtsvragen rond voortplanting en erfelijkheid, Kluwer, Deventer. Gezondheidsraad: 1989, Erfelijkheid: wetenschap en maatscliappij. Over de mogelijkheden en grenzen van erfelijkheidsdiagnostiek en gentherapie, Staatsdrukkerij en Uitgeverij, Den Haag. Hertogh C. M. P. M., van Leeuwen, E., Varkevisser C. A.: 1990. 'De voorspellende test by de chorea van Huntington en het verzoek niet gei'nformeerd te worden', Med. Tijdschrift voor Geneeskunde (134), 14,714-718. Kuitert, H. M.: 1988, 'Gebruik maken van genetische gegevens; een morele beoordeling van de directe maatschappelijke gevolgen', in Wetenschappelijke Raad voor het Regeringsbeleid, De maatschappelijke gevolgen van erfelijkheidsonderzoek, Staatsdrukkerij en Uitgeverij, Den Haag, pp. 35-48. Leeuwen E. van: 1990, 'Between scientific application and therapy: The ethical consideration', in H. van de Donk, W. Hennessen Developments in biological standardization, Vol. 71, pp. 161-170, Karger, Basel. Minister van Justitie: 1990, 'Brief van 2 april aan de Tweede Kamer der Staten Generaal, 19218, nr. 41', Staatsdrukkerij en Uitgeverij, Den Haag. Salomons, R. A., 1989, 'Erfelijkheidsonderzoek en verzekeringen: Verzekeringstechnische aspecten', Het verzekeringsarchief, 66,189-92. Soeteman, A.: 1989, 'Erfelijkheidsonderzoek en verzekering: Wat mag de verzekeraar?', Het Verzekeringsarchief, 68,193-201. Steering Commission on Future Health Care Technology: 1988, Anticipating and Assessing Health Care Technology, volume 5. Developments in Human Genetic Testing, Kluwer, Dordrecht.
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limited perspective: If autonomy is formulated as a principle based on the mutual recognition of a common humanity, then the answer is positive. Everybody has the responsibility to answer the questions regarding the ends and the meaning of his life in relation to others. But if autonomy is formulated as the ability to choose the most adequate alternative which society offers, the answer is negative. Responsibility is then considered to be a special kind of liability to the institutional rules of society.
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Yarborough, M., Scott, J. A., Dixon, L. K.: 1990, ' The role of beneficence in clinical genetics: Non-directive counseling reconsidered', Theoretical Medecine (10), 139-149. De Wert, G. M. W. R. and De Wachter, M. A. M.: 1990, Mag ik uw genenpaspoort? Ethische aspecten van dragerschapsonderzoek bij de voortplanting, Ambo, Baarn.
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THE RIGHT TO GENETIC INFORMATION: SOME REFLECTIONS ON DUTCH DEVELOPMENTS
Key Words: autonomy, freedom of choice, justice, responsibility, right not to know. INTRODUCTION
Recent developments in clinical genetics have raised a variety of responses in Western Europe. Different value systems as well as the remembrance of the abuse of medical science during World War II evoked serious doubts concerning the question whether these developments should be seen as a specimen of medical progress. In the Netherlands, genetic engineering and the critical evaluation of scientific research are being extensively discussed. Problems concerning the respect of autonomy, the confidentiality of data, the right to access of information by third parties, and the right not to know are the main ethical issues in this debate. In this paper we will survey these developments in the ethical debate. But before beginning the survey, some preliminary information concerning the Dutch organization of clinical genetics is given. Most genetic disorders are diagnosed and treated in one of the eight centers of clinical genetics. These centers are well-equipped and linked to academic institutes. It is estimated that 7 to 10 Evert van Leeuwen, Ph.D. Dept. of Philosophy and Medical Ethics, Faculty of Medicine, Free University, Van der Boechorststr 7,1081 BT Amsterdam, The Netherlands. Cees M.P.M. Hertogh. M.D. Ph.D. Dept. of Philosophy and Medical Ethics, Faculty of Medicine, Free University, Van der Boechorststr 7, 1081 BT Amsterdam. Janskliniek, Stichting Hervonnde Diakonale Huizen, Ridderstr. 32 2011 RS Haarlem, The Netherlands. The Journal of Medicine and Philosophy 17: 381-393,1992. © 1992 Kluwer Academic Publishers. Printed in the Netherlands.
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ABSTRACT. New developments in genetics are rapidly spreading over the Western World. The standards of clinical practice differ however according to local value- and health-care systems. In this article a short survey is given of Dutch developments in this field. An effort is made to explain the philosophical and ethical background of Dutch policy by concentrating on autonomy, responsibility and the right not to know.
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II. ETHICS AND GENETICS
To understand the Dutch way of dealing with bioethical problems, the following remarks have to be borne in mind. Firstly, ethical issues are not considered to belong to the exclusive domain of some experts. They are thoroughly discussed in society at large by groups with various interests and perspectives. The media, the churches, the political parties, etc. all take part in the general debate. Health care professionals, ethicists, lawyers and patientunions deliberate at meetings, conferences and in special commissions about the main issues. Secondly, the variegated value-
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thousand full grown babies (4-6%) are born each year with an inborn or genetic disorder. At least 32% of early deaths in the first year of life is due to those disorders. Genetic counseling with respect to these disorders has developed rapidly in recent years and is, since 1985, covered by health insurance including coverage for social and psychological support. In 1986, prenatal testing was performed on 5000 pregnant women. Approximately 4% of the fetuses tested had disorders which led to the choice for abortion. The moral issues which are raised by the developments of clinical genetics depend on the kind of disease involved. The right not to know is, for instance, particularly important in the case of late onset genetic diseases, such as Huntington's Disease, which is autosomal dominant. People who want an exclusion-test of their offspring can ask for a non-disclosure of their own status, based on the right not to know (Hertogh et al., 1990). These and other moral problems are mostly dealt with within the contacts between counselor and counselee. The information is regarded as absolutely private while the consequences of the testing, such as the abortion of a fetus, are separated from the counseling-procedure. The storage of information is subjected to the law of registration of personal data, which must protect the privacy of people. All the measures which should be taken at a more general level of society in order to regulate the public consequences of genetic counseling and screening, are discussed by a Commission of the Dutch Health Council. This governmental advisory board published an influential report in December 1989. The contents of this report will be discussed in the following survey. We will concentrate on the questions regarding late onset of genetic diseases and diseases without a proper blueprint for therapy.
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orientations result in different conceptions of the issues at stake. In the Netherlands, an important tradition of "Gesinnungsethik" still exists as in Germany. This ethics focusses primarily on the meaning of human life and the subsequent obligations in personal existence. The various shapes of these conceptions are acknowledged in society by stressing the fundamental respect for autonomy, i.e., the freedom and capacity to choose between different alternatives. This freedom is of course not an ethical absolute as it has its legal and social limits. But within these limits people are allowed to choose their own way of life, according to their philosophy and religion. Freedom of choice is also a primary value in bioethics. Policies dealing with the introduction of new techniques, like those of genetic screening and counseling, are usually based on the principle of mutual respect for autonomy. In some cases it might however be difficult to decide what follows from this principle. The Commission of the Dutch Health Council allows for different opinions with respect to the question to what extent a genetic counselor may give advice on request (Gezondheidsraad, 1989, p. 78-79). Some members of the commission reject such advice on request. In their view, the counselor is never able to determine the best choice fitting the beliefs and the particular situation of the counselee. According to others, such advice is acceptable in exceptional cases, provided that it is explicitly stated as being the personal opinion of the counselor. Both views are considered to be compatible with a principle of non-directivity - derived from the principle of respect for autonomy - stating that the counselor should not interfere professionally with the philosophical and ethical beliefs of the counselee (Gezondheidsraad, 1989, p. 77). The advice should therefore not favor one of the possible options. In the opinion of the Dutch Health Council, the principle of respect for autonomy implies that the counselee has a right to know all the data which are of interest to him, including the gender of the foetus in the case of prenatal testing. Retaining such information has to be justified on therapeutic grounds and not by moral conviction (Gezondheidsraad, 1989, p. 97). The same principle gives the counselee a right not to know. The commission of the Dutch Health Council acknowledges such a right as based on the constitutional right to privacy (Gezondheidsraad, 1989, pp. 97-98). However, the right not to know is not an ethical absolute. If other people are involved, for instance relatives or children, a
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conflict of interests might arise. In these highly exceptional cases, in which other people might be seriously harmed and the counselor finds himself in a conflict of duties, one might ignore the right not to know (Gezondheidsraad, 1989, pp. 105-106). The respect for autonomy has a deeper source in the endorsement of humanity. This recognition is also one of the foundations of the Dutch health-insurance system, both in public health insurance and in private health insurance. Although the rates sometimes differentiate between health-conditions and foreseen illnesses, a solidarity-principle governs the system in order to guarantee everyone basic health-care facilities. The principle of solidarity and the right of equal access to basic health care facilities reflect strong religious and political intuitions. They are usually considered as the social and economic prerogative of the freedom to choose and the right not to know. The possibility to choose between having full genetic information or abstaining from it follows from the health-insurance system, in which personal choices are financially neutralized by the aggregational counting of risks. This financial neutrality makes it at present unnecessary for the government to become a partner in the ethical discussions. Public measures will have to account for the principle of solidarity providing the care of patients who suffer from incurable diseases. The fact that genetic tests have become available does not alter anything in this respect: One does not choose his own genetic make-up. Respect for autonomy is therefore mostly balanced against the immediate consequences to others and not against economic values. As a consequence, the ethical issues concerning the personal options in genetic counseling remain primarily confined to the physician-patient relationship. Governmental or legal ruling is considered only if problems cannot be solved otherwise. In rare cases, if the problems cannot be reasonably solved, people are prepared to,go to court or parliament in order to demand their presumed rights. But in general it is believed that the dictum of a judge cannot settle anybody's problems. 'Wrongful life' or 'wrongful birth' cases have, for instance, not taken place in the Netherlands, although they are perhaps feasible under Dutch law (Gezondheidsraad, 1989; Gevers & Leenen, 1986). The reticence concerning the role of society, including the law, is one of the main differences between Dutch traditions in dealing with ethical problems and for example those in Anglo-Saxon countries, like
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the USA. Freedom from state interference in matters of personal life is still highly esteemed in the Netherlands. HI. FUTURE DEVELOPMENTS IN GENETIC COUNSELING AND SCREENING Downloaded from http://jmp.oxfordjournals.org/ at Bibliotheek TU Delft on March 20, 2015
The social consequences of the developments in genetic screening and testing do not only concern the rights of the individual. At the level of society, for instance where problems of allocation and insurance-policy are concerned, the principles of justice and equity are also important. Considerations on these levels might in the long run influence the situation of micro-ethics. In the Netherlands, the government strongly appeals to social responsibility in all kinds of public issues. Freedom and autonomy have their counterpart in social obligations, so they are usually stated by politicians. Therefore, some expect that the emphasis will move away from respect for autonomy toward social obligations and liabilities, as advances continue to be made in genetic screening and counseling. The Steering Committee on Future Health Scenarios, for instance, reported on those probable changes in 1988. The Committee developed two scenarios, one based on the principle of respect for autonomy, another on the general interests of society at large (Steering Committee, 1988, p. 78). The latter scenario mentions growing social pressure on those who are at risk to undergo genetic testing. It is calculated that the combined activities of diagnostic services, genetic counseling, prenatal testing and the screening of newborns and carriers would be highly cost-effective. The large savings resulting from testing programmes could therefore change the attitude of tolerance towards those who are at risk for severely handicapping diseases (Steering Committee, 1988, pp. 73-78). At present this scenario is not a realistic one. Health-insurance has always covered risks which resulted from genetic transmission and the availability of tests does not alter anything if there is no proper blueprint for therapy. The only possible change which might be expected regards the differentiation of insurance rates in private healthcare, but this is probably not feasible under Dutch law. Things differ in the area of risk-insurance as a complement of social security. These insurances are generally not considered to fulfil basic needs, but are seen as additional investments. Life insurances and disability insurances are business transactions, based on the (Dutch) Commercial Code. Before making a deal, the
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insurance companies have the legal right to demand all available information, including the knowledge resulting from previous genetic testing. Available genetic information, obtained previously by the person, should in their opinion be disclosed within reasonable limits. Such limits regard the interests of both parties and the kind of agreement at stake. Further information should be obtained by medical examination, sometimes including an HFV-test. The ethical problems involved in obligatory HIVtesting show a close analogy with the testing on genetic diseases. Therefore, policies are being developed in which the two issues are taken together. Several professional and governmental organizations have commissions at work to settle the ethical problems involved in these and related issues. The Commission of the Dutch Health Council has taken a stand in the case of medical examination: it rejected any kind of mandatory testing on genetic diseases on the grounds that such force is incompatible with the constitutional right to privacy. With respect to medical examinations, in order to get insurance or a job, a legal interdiction of direct genetic testing is pleaded, while people should remain free to refuse to give available information within reasonable limits (Gezondheidsraad, 1989, pp. 157-167). The insurers have stated in reply that they are willing to accept a release of the obligation to inform for a trial period of five years in the case of testing for late onset of genetic disease. The covering limits are the same for HTV-testing. The Minister of Justice has, in turn, made public that he is prepared to follow this agreement for the suggested period (Ministerie van Justitie, 1990). Together these developments exemplify the manner in which the commitment to the constitutional right to privacy and the growing possibilities of obtaining information about genetic diseases are matched. The fundamental belief which governs the Dutch ethical policy is based on the right of every individual to shape his own life. The extent to which this belief is compatible with the principle of respect for autonomy might be questioned. Following the recommendations of the Dutch Health Council and subsequent reports, an individual may conclude that the best option to avoid any difficulty with social and private security is to have no genetic information at all. The right not to know gives the best chances on being well-insured. That option is, however, not always in the interest of the individual, nor in that of his relatives, including offspring, nor in that of society. The question resulting
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from this survey therefore is: Do the principles of medical ethics, like autonomy and justice, not demand some obligation to inform yourself and others about your genetic status within the limits of reason, thus excluding a right not to know?
The principle of respect for autonomy has its main objective in refraining from interfering with, or from attempts to interfere with, the autonomous choices and actions of others. People are allowed to act in a way which is not subjected to the controlling constraints of others. As such, the principle implies the obligation of informed consent in the physician-patient relationship and it gives the patient the right to full disclosure of information regarding his health condition. In Justice Cardozo's famous statement: "Every human being of adult years and sound mind has a right to determine what will be done with his own body" (Beauchamp and Childress, 1989, p. 73). In bioethics, 'responsibility7 is usually considered to be a secondary notion and not a primary principle. To be responsible and to act in a responsible way means: to be able to make autonomous choices between alternatives, to be willing to gain knowledge of the consequences and to be prepared to act in a consistent manner with respect to the consequences of a choice. The right not to know has to be related to this notion of responsibility. Does everybody have the right not to be informed about events which will possibly happen in his future life, if that information is based on physical evidence which lies beyond his will and power? If no reasonable action is possible to avoid such possible events, the information about those events may be considered as a constraint on the freedom to make autonomous choices. It can therefore be argued that the choice to have such information must in any case be taken autonomously, without any controlling constraint. To decide either way is a private matter in which no one is allowed to interfere. The arguments which favor informed consent as an affirmative obligation of health-care professionals in a fiduciary relationship, also favor in this way the acceptance of a right not to know in genetic counseling (Kuitert, 1988; De Wert & De Wachter 1990, p. 153-157). One should not be forced to give up his autonomy and accept constraints on his personal life and future by providing information to others.
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IV. AUTONOMY, RESPONSIBILITY, AND THE RIGHT NOT TO KNOW
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Society has to respect the information as fiduciary and personal, in accordance with the constitutional right to privacy. But a preliminary question is not sufficiently answered by such a line of reasoning. Can the choice to have or to refuse genetic information truly be based on autonomy? Although autonomy fosters freedom of decision, it does not imply unqualified liberty to choose. One should act on reasonable grounds. Kant's concept of autonomy and Mill's concept of an acting individual both suggest that someone might be said to be able to act autonomously only when in possession of all possible information. If information is explicitly denied for personal or social reasons, it might be concluded that the person in question lives apparently under a burden of stress or social threat, and therefore does not act autonomously at all. The threat of the possible contents of the information and the inability to cope with this threat, deprive someone of his autonomy and accordingly of his responsibility. The right not to know is then only defendable as an act of beneficence or non-maleficence towards a person who is not able to act in an autonomous or responsible manner. The freedom of choice between having and refusing such knowledge can in this line of argument not be based on the principle of respect for autonomy, but must be considered as an act of beneficence granted to someone in order to restore his autonomy in time (Yarborough et ah, 1989). Both lines of argument are present in Dutch ethical literature concerning the freedom or duty to undergo genetic counseling, when someone knows that he has an a priori risk (De Wert & de Wachter 1990, pp. 145-165). The same problems hold with respect to genetic screening. Development of genetic screening may result in procedures to which people are submitted who do not know that they have an a priori risk. In these cases the question whether or not one can decide autonomously to obtain information, is even more complicated. It might for instance not even be sure whether someone can benefit at all from the information obtained. If such benefits are not predictable, it could be considered supererogatory to have such a test, while in other cases it might even be considered a use of illicit force and an abuse of medicine (Kuitert, 1988). However, the information might be considered as necessary to every individual who wants to deal in a reasonable way with the choices about his future life. In that case refraining from genetic evidence would again be irrational.
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With respect to genetic screening and counseling, the principle of respect for autonomy does not seem to yield a decisive argument with regard to the acceptance or rejection of the right not to know. The problem is raised by the principle itself. Autonomy signifies that all normal people, of sound mind and adult years, are equally independent. As such it is a formal notion by which the freedom to choose and the social obligations towards fellowmen are to be developed, including a concept of justice by which people who act autonomously are considered equal. Principles of distributive justice and notions of fairness concerning factual inequality may then follow. But the information which is obtained in genetic testing makes persons unequal in a different sense: it gives them a kind of pre-determined start in which they remain dependent. Scientific knowledge may force them to give up a part of their freedom, not because of some categorical imperative discerned by autonomous reasoning in the soundness of mind, but because of a spell which is cast upon their physical make-up. Respect for autonomy does not foster freedom in that situation, it demands submittance to information. Instead of liberating people and making them able to shape their lives according to their own philosophy and religion, medical knowledge thus becomes a social force in the distribution of inequality. This will first of all happen in contractual relationships. Companies which sell insurance do so on the basis of mutual respect for autonomy. This means that both parties must be able to judge freely whether or not the contract is acceptable. Life-insurance, for instance, can be said to foster the common interests of people who have equal chances to survive a certain period when they enter the contract (Salomons, 1987). In such a situation, it would simply be nonsensical to grant someone a right not to know his real risk for a late onset disease. That would come down to concealing the inequality in chances of survival, thus damaging the interests of others. In these relationships the inequality and not the equality is of major significance. The veil of ignorance about future events is lifted as far as possible. The premisses of a (Rawlsian) theory of justice therefore simply do not seem to hold. They only grant a right to basic health-care facilities on the basis of a principle of (subsidizing) solidarity. Besides such a right to a decent minimum of health care, all other policies will have to consider the inequality as a fact (Soeteman, 1989). The substantial inequality which results from predictive genetic tests is therefore hard to
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overcome by a combination of the principles of respect for autonomy and of distributive justice, thereby leaving the people concerned in great distress and moral uncertainty. Is there a way out of the problem? To answer this question we have to remember that the combined principles of respect for autonomy and distributive justice are abstracted from specific situations, i.e. informed consent and the right of equal access to health-care facilities. Medical science and practice should in general not interfere with the right to self-determination, whereas society has to provide everybody with a fair share in health-care facilities. The basic intuition underlying these principles concerns the meaning of human life. This meaning should not be subjected to medical reasoning. Stating that everybody has a solemn right to self-determination, presupposes the mutual recognition of snared humanity. In this perspective, responsibility means that every human being has to answer some questions with respect to the meaning of his personal life in relation to others. As such the intuition focusses also on the differences between human beings in their choice of a life-perspective, or their ways of being not equal. The principles of respect for autonomy and of distributive justice supersede this inequality by stating a formal equivalence of human beings, an equality in value. The factual differences are acknowledged and respected by considering the equivalence as the moral notion which governs the institutional practice. Although we know that human beings are not equal, we think in terms of equality for moral reasons. The notion of moral equivalence is at stake where differences in genetic make-up are concerned. Besides other differences, people appear to differ in their genetic constitution and have accordingly different life-spans. This difference does not constitute a new fact, it has been known for ages. The differences are only reflected in genetic formulae. The substantial character of the information however does not in itself differ from other substantial evidence about the unequal starting points in life, concerning, for example, social or educational backgrounds. If the principles of respect for autonomy and distributive justice should hold with regard to the latter kinds of substantial inequalities, thereby granting each individual his own chance for the pursuit of happiness, there is no reason why they would not hold for genetic inequalities as well. This implies that, as far as genetic medicine is concerned, a right not to know should be granted to everybody, thus giving
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everybody an equal chance to live according to his own capabilities and religious and philosophical beliefs. Only in this way it can be prevented that medical practice becomes a threat to people. A distribution of goods by means of medical science poses such a threat to the autonomy of certain people, because it will inevitably result in their social invalidation and turn them into some kind of outcast (Foucault, 1982, p. 232). Especially the latter threat is discussed in Europe and in the Netherlands. An unrestricted right not to know, as a human right to resist an evil, encompassing medical science, is claimed (Burnier, 1990). Sometimes even outbursts of irrational resistance against medicine and bio-ethics occur. These protests have to be met by arguing that the institutional practice of medicine has been created in western society in order to serve the health of everybody and to restore autonomy and freedom in cases where the so-called 'natural lottery7 results in a life of pain and misery. With this in mind, the inequalities between different people become substantial facts in every kind of medical practice. They have to be dealt with in the interest of the patient, respecting his values and life-perspective. The right not to know can only be based on this respect for human life in all its varieties (Canguilhem, 1978, pp. 171-179). A patient can demand this right, and sometimes the physician acknowledges it in an act of beneficence. In these cases, the right not to know is restricted to the benefit of the patient and it should have no harmful effect on others. Is the beneficent act also extendable to society as a whole? One might argue in favor of this, by saying that all medical information belongs in the end to the realm of privacy. However, this is not feasible with respect to the practice of medical examinations. A limited right not to know, based on the principle that everybody should have a fair chance in social life, can nevertheless be properly defended. Firstly because genetic information delivers probabilities. It should therefore not be interpreted as some kind of determination (van Leeuwen, 1990). Secondly, all human beings differ and have different chances in live. To take genetic risks into account will probably result in the exclusion of some groups from society, an exclusion which could be unfair compared to the risks which people normally take. The question whether or not a right not to know can be answered by using the principle of respect for autonomy, has to be answered in this
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REFERENCES Beauchamp, T. L. and Childress, J. R: 1989, Principles of Biomedical Ethics (3rd ed.), Oxford University Press, New York. Burnier, A.: 1990, De achtste scheppingsdag. Essays 1987-1990, Meulenhoff, Amsterdam. Canguilhem, G.: 1978, On the Normal and the Pathological, D. Reidel Publishing Company, Dordrecht/Boston/London. Foucault, M.: 1982, 'On the genealogy of ethics: an overview of work in progress' in H. L. Dreyfus H. L. and P. Rabinow, (ed.), Michel Foucault, Beyond Structuralism and Hermeneutics, University of Chicago Press, Chicago. Gevers, J. K. M. and Leenen, H. J. J.: 1986, Rechtsvragen rond voortplanting en erfelijkheid, Kluwer, Deventer. Gezondheidsraad: 1989, Erfelijkheid: wetenschap en maatscliappij. Over de mogelijkheden en grenzen van erfelijkheidsdiagnostiek en gentherapie, Staatsdrukkerij en Uitgeverij, Den Haag. Hertogh C. M. P. M., van Leeuwen, E., Varkevisser C. A.: 1990. 'De voorspellende test by de chorea van Huntington en het verzoek niet gei'nformeerd te worden', Med. Tijdschrift voor Geneeskunde (134), 14,714-718. Kuitert, H. M.: 1988, 'Gebruik maken van genetische gegevens; een morele beoordeling van de directe maatschappelijke gevolgen', in Wetenschappelijke Raad voor het Regeringsbeleid, De maatschappelijke gevolgen van erfelijkheidsonderzoek, Staatsdrukkerij en Uitgeverij, Den Haag, pp. 35-48. Leeuwen E. van: 1990, 'Between scientific application and therapy: The ethical consideration', in H. van de Donk, W. Hennessen Developments in biological standardization, Vol. 71, pp. 161-170, Karger, Basel. Minister van Justitie: 1990, 'Brief van 2 april aan de Tweede Kamer der Staten Generaal, 19218, nr. 41', Staatsdrukkerij en Uitgeverij, Den Haag. Salomons, R. A., 1989, 'Erfelijkheidsonderzoek en verzekeringen: Verzekeringstechnische aspecten', Het verzekeringsarchief, 66,189-92. Soeteman, A.: 1989, 'Erfelijkheidsonderzoek en verzekering: Wat mag de verzekeraar?', Het Verzekeringsarchief, 68,193-201. Steering Commission on Future Health Care Technology: 1988, Anticipating and Assessing Health Care Technology, volume 5. Developments in Human Genetic Testing, Kluwer, Dordrecht.
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limited perspective: If autonomy is formulated as a principle based on the mutual recognition of a common humanity, then the answer is positive. Everybody has the responsibility to answer the questions regarding the ends and the meaning of his life in relation to others. But if autonomy is formulated as the ability to choose the most adequate alternative which society offers, the answer is negative. Responsibility is then considered to be a special kind of liability to the institutional rules of society.
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Yarborough, M., Scott, J. A., Dixon, L. K.: 1990, ' The role of beneficence in clinical genetics: Non-directive counseling reconsidered', Theoretical Medecine (10), 139-149. De Wert, G. M. W. R. and De Wachter, M. A. M.: 1990, Mag ik uw genenpaspoort? Ethische aspecten van dragerschapsonderzoek bij de voortplanting, Ambo, Baarn.
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