Christoph Rehmann-Sutter

BackgroundThe introduction and wide application of non-invasive prenatal testing (NIPT) has triggered further evolution of routines in the practice of prenatal diagnosis. ‘Routinization’ of prenatal diagnosis however has been associated with hampered informed choice and eugenic attitudes or outcomes. It is viewed, at least in some countries, with great suspicion in both bioethics and public discourse. However, it is a heterogeneous phenomenon that needs to be scrutinized in the wider context of social practices of reproductive genetics. In different countries with their different regulatory frameworks, different patterns of routines emerge that have different ethical implications.This paper discusses an ethics of routines informed by the perspectives of organizational sociology and psychology, where a routine is defined as a repetitive, recognizable pattern of interdependent organizational actions that is carried out by multiple performers. We favour a process approach that debunks the view – which gives way to most of the concerns – that routines are always blindly performed. If this is so, routines are therefore not necessarily incompatible with responsible decision-making. Free and informed decision-making can, as we argue, be a key criterion for the ethical evaluation of testing routines. If free and informed decision-making by each pregnant woman is the objective, routines in prenatal testing may not be ethically problematic, but rather are defensible and helpful. We compare recent experiences of NIPT routines in the context of prenatal screening programmes in Germany, Israel and the Netherlands. Notable variation can be observed between these three countries (i) in the levels of routinization around NIPT, (ii) in the scope of routinization, and (iii) in public attitudes toward routinized prenatal testing.ConclusionAn ethics of routines in the field of prenatal diagnostics should incorporate and work with the necessary distinctions between levels and forms of routines, in order to develop sound criteria for their evaluation.

This paper examines women’s experiences with decision-making about non-invasive prenatal testing (NIPT). Such tests offer knowledge about chromosomal disorders early in pregnancy, without the risk of miscarriage associated with invasive procedures such as amniocentesis. Based on qualitative interviews with women in Germany who used, or declined, NIPT, we show how some women, who would not consider amniocentesis due to the risk of miscarriage, welcome the knowledge provided by, and the additional agency resulting from, NIPT. For others, declining the offer to “know more” becomes increasingly difficult to articulate. The absence of risk strips women of a “good reason” to justify their decision not to test, thus implicitly challenging their “right not to know.” Moreover, NIPT heightens moral dilemmas within relationships with partners, existing children, and sometimes other close relatives. While clinically “non-invasive,” we argue that NIPT changes decision-making in an ethically and socially highly significant way.

Enhancement - Behinderung - gutes Leben. Der Band verknupft diese drei Themen und entwickelt einen breiten Zugang zur Debatte um die biotechnologischen Moglichkeiten zur Verbesserung des menschlichen Korpers. Die Beitrage gehen von der Arbeitshypothese aus, dass die Erfahrungen von Menschen mit Behinderungen wichtig sind, um ethische Fragen, die sich bei Enhancement-Projekten stellen, konkreter - und so besser - zu verstehen. Eine zweite Hypothese ist, dass die Sprache der Rechte, Pflichten und Verbote nicht ausreicht, um zu erfassen, worum es im Kern der Fragen zum Enhancement in ethischer Hinsicht geht. Stattdessen muss geklart werden, inwieweit mit einer moglichen Verbesserung auch eine Steigerung des menschlichen Wohls verbunden ist und welche Veranderungen im Kontext eines guten Lebens wunschenswert sind."

Patients at the end of their life who express a wish to die sometimes explain their wish as the desire not to be a burden to others. This feeling needs to be investigated as an emotion with an intrinsically dialogical structure. Using a phenomenological approach, two key meanings of the feeling of being a burden to others as a reason for a wish to die are identified. First, it is an existential suffering insofar as it contains the perception of a plight so desperate that it can only be relieved by the end of the patient’s existence. Second, it is an empathic concern that implies caring about those who bear the burden of caring for the person at the end of their life. It is therefore a moral emotion, encompassing a series of difficulties, including the subjective perception of a stark imbalance between giving and taking, the adequacy of the representation of the caregiver burden in the patient’s mind, and the danger of diminishing the worth of one’s life out of shame or self‐denigration. R. D. Laing’s terminology of crossed perspectives in interexperience is used to systematically distinguish the actual caregiver burden, the patient’s view of the caregiver burden, the stress for the patient in feeling that s/he is a burden to the caregiver, and the caregiver’s view of the patient’s stress. The sense of being a burden implies the belief that the caregiver feels burdened, and the fear that this burden could become unbearable.

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care.

Are we vulnerable due to death? It is undisputed that the life of human beings must be preserved also at its end because it still can be threatened. But does death itself constitute an injury if it is not caused by external influences, and rather grows out of the life process of mortal beings - in the sense of the necessary dissolution of life? In view of Henk ten Have’s functional theory of vulnerability, I distinguish between the aspects of exposure, sensitivity and the ability to absorb events in such a way that no injury occurs. Death growing out of life presents a context that is different from that of violent or preventable death. I argue that at the end of life, dying itself is not the injury. Injuries should be suspected in the circumstances of death, not in death itself. The main reason for this claim is ethical: if dying itself were seen as the actual evil, dying processes would be equalized. One could no longer well recognize the threatening injuries in their course. Based on this, the article examines vulnerability in connection with wishes to die, specifically based on the motive of not wanting to be a burden for others.

Die breite Einführung nicht-invasiver pränataler Tests sowie die Ausweitung der Testziele über Trisomien hinaus machen es notwendig, Sinn und Ziel der pränatalen Diagnostik als emergente soziale Praxis grundsätzlich zu diskutieren. Wenn, wie angenommen wird, PND nicht zu eugenischen Zwecken, sondern zur Stärkung der Autonomie dienen soll, muss gefragt werden, welche Bedeutung die Entscheidungen haben, ein bestimmtes zukünftiges Kind zu gebären. Stephen Wilkinson hat vorgeschlagen, PND als eine Form „selektiver Reproduktion“ zu verstehen. In diesem Paper wird geprüft, ob die Charakterisierung der Entscheidung nach PND als „Selektion“ zutrifft und welche moralischen Vorannahmen ihr zugrunde liegen.Es zeigt sich, dass das Konzept der „selektiven Reproduktion“ die Handlungen der PND inakkurat repräsentiert. Es beinhaltet zudem sowohl eine Abstrahierung als auch eine Distanzierung. Es nimmt an, dass Frauen und Paare entweder falls nötig mehrere Schwangerschaften planen, um ein gesundes Kind zu erzeugen, oder sich als Ausführende einer selektiven Strategie auf der Populationsebene verstehen. Die Einschränkung der ethischen Diskussion auf das Problem der Selektion verdeckt zwei wichtige Problemfelder, die die konflikthaltige Situation der PND aus der Perspektive der Frau oder des Paares charakterisieren: die Schwangerschaft als persönliche Beziehung und den Akt des Abbruchs der Schwangerschaft. Aufgrund seiner impliziten Normativität wird „selektive Fortpflanzung“ als sinnvolle Bezeichnung für die Praxis der PND zurückgewiesen.

BackgroundPrecision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review.MethodsWe used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine.ResultsMany patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health.ConclusionsNational legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment.

Auch wenn der Tod nicht gewählt wird, wenn das Faktum des Todes unabwendbar und endgültig ist, ergeben sich für Menschen, die sich dem Sterben zuwenden, Möglichkeiten. Ausgehend von der Annahme, dass der Tod in ontologischer und ethischer Hinsicht relational verstanden werden muss, legt dieses Kapitel die Bedeutung des Todes – in Anlehnung an Vladimir Jankélévitch – in der Du-Perspektive, in der Ich-Perspektive und in der dritten-Person-Perspektive aus. Für die Zurückbleibenden entsteht die Aufgabe, den Prozess des Gehen-Lassens zu begreifen und zu gestalten. Eine Reihe von medizinethischen Dilemmata entstehen, die damit strukturiert werden, dass einem Sterbenden eine Rolle zugewiesen wird, die nur zu einer bestimmten Zeit gilt: wenn der Sterbeprozess begonnen hat. Wann hat er aber begonnen? Zwei soziologische Modelle der Sterberolle von 1977 und 2007 werden miteinander verglichen. Es zeigen sich Veränderungen in der Einstellung zu Sterbenden und zur Aufgabe der Medizin. Für die Sterbenden selbst entsteht die Aufgabe, die Anderen, die Welt und das ganze Leben zurückzulassen. Wünsche zum Sterben – auch eigentliche Sterbewünsche – enthalten Handlungsräume und reflektieren Verantwortung. Ein Wunsch zu sterben ist nicht einfach da oder nicht da, sondern wird gestaltet und fein austariert. Wünschen ist ein Akt des Denkens. Ein besseres Verständnis der Bedeutung von Wünschen am Lebensende kann zur Klärung der Fragen um ein „gutes Sterben“ im Kontext einer Ethik des „guten Lebens“ beitragen.

ABSTRACT The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient‐centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal ‘depth of field’. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics.