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Modern medicine is increasingly bringing the future to the present. Novel diagnostic procedures allow advanced medical prognoses quantifying the future outcome of an illness and its course. Thus, the understanding of the likelihood of therapeutic strategies to succeed or fail in an individual patient is becoming ever more transparent. Individuals are facing the complicated task of transferring these risk assessments to fit their personal life perspectives, develop anticipatory ‘coping strategies’, and, quite often, make concrete decisions and choices about themselves.

How does a person feel when faced with a 20% risk of contracting cancer of the intestine in the next 10-15 years? How do expectant parents deal with a 1:280 chance of having a child with trisomy 21? What are the criteria for responsible decisions in such situations? - Increasing prognostic accuracy of modern medicine, paradoxically, brings about a new dimension of uncertainty for the individual, whether still healthy or already a patient. Prognoses may evolve due to on-going progress in medical research. Examples are the constantly evolving arsenal of new anti-cancer medications, or the fundamental progress seen in treating infectious diseases such as HIV. Questions thus arising with regard to medical ethics are often vexing as an ever-increasing understanding of one’s own medical fate goes hand in hand with continued uncertainty and lack of knowledge. This concerns both the individuals with a certain prognosis and their relatives as well as the medical experts who are called upon to provide advice and council patients and their relatives. Converting a medical prognosis into a subjective understanding and reassessment of life quality may pose existential difficulties.

New-found prognostic technologies may also affect prenatal life. Owing to progress in genetic testing, the possibility of recognizing prenatal health risks before physical signs of disease are visible is now possible. This presents the individual with a plethora of new challenges. Improved ability of looking into the future now allows us to not only prognosticate the course of a disease, but to actually predict future health problems long before any signs or symptoms are apparent.

The future implications of these developments for society, especially of predictive genetic testing, have recently become the focus of active investigation. The challenge of anticipation of one’s future medical problems raises a multitude of fundamental and difficult ethical questions. What answers can specialized modern medical ethics and practical philosophy provide? What legal questions must be considered? And how can the paradigm-shift presented by modern medical diagnostics be integrated into historical and cultural frameworks?

Many people are touched by the religious dimension of their lives. What answers can religion and theology provide to help coping with the prospect of a future about which we know increasingly more, but still remains uncertain? Anticipation of the future is dealt with in many ways by religion, e.g. in the prophesy and hope of the kingdom of God. Can religion provide coping strategies to help overcome the life crises brought about by a medical prognosis, or a predictive test?

The volume at hand is based on a conference convened in Basel in June 2010, organized by Karger Publishers under the auspices of the University of Basel and chaired by the signatories. It was the goal of the conference to bring together specialists from diverse fields of medicine, ethics, philosophy, religious science and theology. The aim was to encourage wide-ranging discussion among a broad audience to generate ideas and approaches towards tackling the implications of the new ‘knowledge of the future’ on societal and individual ethical values. As part of the conference, a workshop organized by Dr. Theol. Gabriella Brahier gave young scientists the opportunity to present their own research on the topic and to share it with distinguished experts. There was also a MA seminar connected with the conference at the Theological Faculty held during the spring semester.

The volume contains most of the papers given at the conference in revised versions. The book also provides transcripts/summaries of the question-and-answer sessions following the presentation of each paper (with the exception of the paper by A. Brueninghaus and R. Porz).

The volume is divided into three sections: ‘Medical Perspectives’, ‘Ethical and Juridical Perspectives’ and ‘Religious Perspectives’.

The first section, ‘Medical Perspectives’, is introduced by the physicianscientist Manuel Battegay. Battegay demonstrates as one example of an impressive success story in medicine the dramatic improvements witnessed over the last 15 years in the therapy and prognosis of HIV infection. The advances give impressive proof that prognosis can change in a very short time period and knowing one’s medical fate might be difficult - from the physicians and patients perspective.

Among the most complex challenges for medical professionals as well as for patients concerned might be the knowledge about medical conditions that affect the personal ability of ‘knowing’, i.e. of intellectual function, such as presented by diseases like Alzheimer’s dementia. The neuroscientist, Andreas Papassotiropoulos, shows that a tremendous gap remains between prognostic statements based on genetic research and the actual fate of an individual or the quality of his/her memory. Despite a growing market of products offering gene test-based ‘personalized medicine’, the actual predictive power of such tests for the individual is usually negligible.

Another emerging field to which genetic testing is applied as a predictive tool - resulting in complex challenges for individual ethical decision making - is prenatal diagnostics. The volume’s second section, ‘Ethical and Juridical Perspectives’, thus begins with an article on this topic by the bioethicist and protestant theologian, Gabriella Brahier. Based on qualitative interviews with consenting pregnant women she analyses individual processes of ethical decision-making. She concludes that these processes are - appropriately - guided by the ethical concept of biographical authenticity. She argues that insights thus derived may modify abstract models of ‘informed consent’ and provide reason for a more proactive and interactive view of the physician’s role in the process of prenatal consultation.

Huntington’s chorea is a rare hereditary monogenic disease. Owing to the highly predictive power of testing for the disease in affected families, it serves as a paradigmatic example of issues surrounding the topic of prediction of future health events. This results in important psychological, sometimes existential, challenges for the person who may want to be tested; it also impacts close relatives (sons/ daughters, and even more so parents) in diverse ways, including questions related to family planning. In their joint article, Anne Brünighaus (social education theory) and Rouven Porz (philosophy) shed light on the often conflictual decision-making processes associated with such a test as well as the coping strategies that help individuals deal with the ambiguity of attaining such knowledge. Consideration of coping strategies must take into account that both the decision to know and the decision not to know intimately affects others, namely the decision-maker’s relatives.

These examples highlight how gene technology, or at least certain aspects of it, present an entirely new type of predictive information about our future and confront us with new requirements of dealing with this knowledge. Does this possibly even fundamentally affect our image of man (‘Menschenbild’)? The philosopher and ethicist, Dieter Birnbaum, argues that in a general and descriptive sense that this is not the case; it may, however, change the way the individual deals with his/her personal (predicted) future. This, in turn, may affect our perception of medical ethics: Does patient autonomy as a moral right imply a right to know in the sense that the physician is obliged to give the patient all the information he/she has access to? If interpreted exclusively as a ‘presumed consent’ (i.e. ‘opting out’) autonomy principle, withholding (partial) information of his/her prospective future from an individual would be ethically wrong only if it was against the patient’s (presumed or outspoken) will. In addition, considerations such as the avoidance of serious harm for the patient may occasionally argue for disclosing or withholding information. The way information is provided should always be adjusted to the ability of the individual to control his/her autonomy.

A related topic is the legal implications surrounding the disclosure of predictive medical information. Bianca Doerr, a legal scholar, reflects on the Swiss Federal Act on Genetic Testing in Humans (HGTA) and its intention to balance the ethical principles of autonomy and beneficence regarding the disclosure of genetic information. While the basic principle of autonomy postulates the right of self-determination of the individual (specifically with regard to the right to know and the right not to know), there is one particular limitation of this right: in the case of ‘overriding interests’ of certain other individuals, particularly close relatives, an individual’s genetic information can be disclosed even without his/her consent. Executing this provision, of course, is a very difficult task requiring deep judicial, medical and ethical reflection.

Making decisions in the face of these ambiguities will often challenge some of the most fundamental beliefs of the individuals concerned. These may often, albeit certainly not always, relate to their religious faith. Addressing this, three selected perspectives from diverse fields of religious bioethics are presented in this volume’s third section, ‘Religious Perspectives’.

Benjamin Gesundheit, physician and ethicist, points out that Jewish medical ethics has always endorsed diverse and differentiated views. Nevertheless, there has always been consensus among Jewish scholars that, if at all possible, medical healing should be attempted and a passively fatalistic attitude should be avoided.

In contrast to pagan fatalism, the belief in divine providence regarding the future of individuals’ lives has always been a principal element of Christianity, as the Protestant theologian and ethicist, Georg Pfleiderer, points out. Christian theology is always suspended in the tension between justification taking place in the past or the future and the immanent or transcendent fulfillment of life. Twentieth century Protestant theology emphasizes the former. Thus, it is guided by an attitude of calmness and ease in dealing with the challenges that predictive medicine, and in particular genetic testing, may hold for us as individuals.

How do Asian religions, namely Buddhism, conceptualize the ethical problems of predictive medicine? The religious scholar, Jens Schlieter, expands on a philosophical understanding of religion as a coping mechanism for the finality of our existence. Thus, in dealing with the terminal stages of an illness it may be helpful to imply the concept of a ‘point of no return’, where medical intervention should be replaced by palliative approaches. From a religious perspective, this concept is aligned with the distinction between the healing and rescuing aspects of belief. This interpretative model is useful to understand the Buddhist concept of karma and its role in dealing with illness. Karma must neither be understood as a single-cause explanation of disease as the consequence of sin, nor is it based on a sharp distinction between immanence and transcendence. Rather, it represents an attempt of finding a balance between contingency and destiny from one’s own perspective. Viewed from the perspective of karma, one’s medical future cannot be known; nevertheless it becomes present when one’s life-span is exhausted. At that point of no return the primacy of healing must yield to the primacy of rescue, ‘because he or she already belongs, in part, to another realm’.

As editors of this volume, we would like to thank all our colleagues from diverse disciplines who presented papers at the conference, participated in discussions and/ or made contributions to this volume. We also wish to express our gratitude to Karger Publishers, namely to Mrs. Gabriella and Dr. Thomas Karger, for their generous support which made the conference and this publication possible.

For significant financial support of the conference and this publication, we wish to acknowledge the Freiwillige Akademische Gesellschaft Basel (FAG) and the Schweizerische Akademie der Medizinischen Wissenschaften (SAMW).

Georg Pfleiderer, Manuel Battegay, Klaus Lindpaintner

Basel, 2012