The elderly are often considered a vulnerable group in public and academic bioethical debates and regulations. In this paper, we examine and challenge this assumption and its ethical implications. We begin by systematically delineating the different concepts of vulnerability commonly used in bioethics, before then examining whether these concepts can be applied to old age. We argue that old age should not, in and of itself, be used as a marker of vulnerability, since ageing is a process that can develop in a variety of different ways and is not always associated with particular experiences of vulnerability. We, therefore, turn to more fundamental phenomenological considerations in order to reconstruct from a first person perspective the intricate interconnections between the experiences of ageing and vulnerability. According to this account, ageing and old age are phenomena in which the basic anthropological vulnerability of human beings can manifest itself in an increased likelihood of harm and exploitation. Thus, we plead for a combined model of vulnerability that helps to avoid problems related to the current concepts of vulnerability. We conclude first that old age as such is not a sufficient criterion for being categorized as vulnerable in applied ethics, and second that reflections on ageing can help to develop a better understanding of the central role of vulnerability in human existence and in applied ethics.
Background
Precision 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.
Methods
We 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.
Results
Many 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.
Conclusions
National 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.
Palliative sedation is an increasingly used and, simultaneously, challenging practice at the end of life. Many controversies associated with this therapy are rooted in implicit differences regarding the understanding of "suffering" as a prerequisite for palliative sedation. The aim of this study is to inform the current debates by a conceptual analysis of two different philosophical accounts of suffering-1) the subjective and holistic concept and 2) the objective and gradual concept-and by a clinical-ethical analysis of the implications of each account for decisions about palliative sedation. We will show that although the subjective and holistic account of suffering fits well with the holistic approach of palliative care, there are considerable challenges to justify limits to requests for palliative sedation. By contrast, the objective and gradual account fits well with the need for an objective basis for clinical decisions in the context of palliative sedation but runs the risk of falling short when considering the individual and subjective experience of suffering at the end of life. We will conclude with a plea for the necessity of further combined conceptual and empirical research to develop a sound and feasible understanding of suffering, which can contribute to consistent decision making about palliative sedation.
Chronic pain patients often miss receiving acknowledgement for the multidimensional struggles they face with their specific conditions. People suffering from chronic pain experience a type of invisibility that is also borne by other chronically ill people and their respective medical conditions. However, chronic pain patients face both passive and active exclusion from social participation in activities like family interactions or workplace inclusion. Although such aspects are discussed in the debates lead by the bio-psycho-social model of pain, there seems to be a lack of a distinct interest in assessing more specifically the social aspects regarding chronic pain. As a result, the social aspects have yet to be taken into a more thorough theoretical consideration of chronic pain and to be practically implemented to help affected patients. By addressing chronic pain patients’ struggle for recognition, this paper attempts to shed light on some of these social aspects. We base this attempt on a theoretical framework that combines patients’ statements with an adaptation of Axel Honneth’s social-philosophical work on recognition. Thus, this paper tries to make a suggestion on how the bio-psycho-social model of pain can live up to its name by helping to address more adequately some of the more neglected aspects in chronic pain patients’ suffering than has been possible to date.
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