Autonomy is a concept that holds much appeal to social and legal philosophers. Within a medical context, it is often argued that it should be afforded supremacy over other concepts and interests. When respect for autonomy merely requires non-intervention, an adult’s right to refuse treatment is held at law to be absolute. This apparently simple statement of principle does not hold true in practice. This is in part because an individual must be found to be competent to make a valid (...) refusal of consent to medical treatment, and capacity to decide is not an absolute concept. But further to this, I argue that there are three relevant understandings of autonomy within our society, and each can demand in differing cases that different courses of action be followed. Judges, perhaps inadvertently, have been able to take advantage of the equivocal nature of the concept to come tacitly to decisions that reflect their own moral judgments of patients or decisions made in particular cases. The result is the inconsistent application of principle. I ask whether this is an unforeseen outcome or if it reflects a wilful disregard for equal treatment in favour of silent moral judgments in legal cases. Whatever the cause, I suggest that once this practice is seen to occur, acceptable justification of it in some cases is difficult to find. (shrink)

The notion of autonomy commonly employed in medical ethics literature and practices is inadequate on three fronts: it fails to properly identify nonautonomous actions and choices, it gives a false account of which features of actions and choices makes them autonomous or nonautonomous, and it provides no grounds for the moral requirement to respect autonomy. In this paper I offer a more adequate framework for how to think about autonomy, but this framework does not lend itself to the kinds of (...) practical application assumed in medical ethics. A general problem then arises: the notion of autonomy used in medical ethics is conceptually inadequate, but conceptually adequate notions of autonomy do not have the practical applications that are the central concern of medical ethics. Thus, a revision both of the view of autonomy and the practice of “respect for autonomy” are in order. (shrink)

The child’s right to an open future aims at protecting the autonomy of the mature person into which a child will normally develop. The justification of state interventions into parental decisions which unduly restrict the options of the prospective adult has to address the problem that the value of autonomy is highly contested in modern pluralist societies. The article argues that the modern majority culture provides young adults with many more options than traditionalist religious communities. However, the options that can (...) be chosen in faith groups, such as the Amish, do not constitute a subset of the options available in the wider society. Therefore, state policies which pursue the goal of providing every child with the greatest possible set of options cannot be based on a neutralist version of political liberalism. The advocates of a child’s right to an open future must rely on a perfectionist version of liberalism which draws on the ideal of leading an autonomous life. Since liberal perfectionism has problematic implications, the article defends a neutralist position that largely refrains from state interference with the educational authority of fundamentalist religious communities. (shrink)

This paper opens a critical conversation about the ethics of international bioethics conferencing and proposes principles that commit to being anti-discriminatory, global, and inclusive. We launch this conversation in the Section, Case Study, with a case example involving the International Association of Bioethics’ (IAB’s) selection of Qatar to host the 2024 World Congress of Bioethics. IAB’s choice of Qatar sparked controversy. We believe it also may reveal deeper issues of Islamophobia in bioethics. The Section, Principles for International Bioethics Conferencing, sets (...) forth and defends proposed principles for international bioethics conferencing. The Section, Applying Principles to Site Selection applies the proposed principles to the case example. The Section, Applying Principles Beyond Site Selection addresses other applications of the proposed principles. The Section, Objections responds to objections. We close (in the Section, Conclusion) by calling for a wider discussion of our proposed principles.One-Sentence Capsule Summary: How should bioethicists navigate the ethics of global bioethics conferencing? (shrink)

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. (shrink)

BackgroundThe Arab population in Israel is a minority ethnic group with its own distinct cultural subgroups. Minority populations are known to underutilize genetic tests and counseling services, thereby undermining the effectiveness of these services among such populations. However, the general and culture-specific reasons for this underutilization are not well defined. Moreover, Arab populations and their key cultural-religious subsets (Muslims, Christians, and Druze) do not reside exclusively in Israel, but are rather found as a minority group in many European and North (...) American countries. Therefore, focusing on the Arab population in Israel allows for the examination of attitudes regarding genetic testing and counseling among this globally important ethnic minority population.MethodsWe used a qualitative research method, employing individual interviews with 18 women of childbearing age from three religious subgroups (i.e., Druze, Muslim, and Christian) who reside in the Acre district, along with focus group discussions with healthcare providers (HCPs; 9 nurses and 7 genetic counselors) working in the same geographical district.ResultsA general lack of knowledge regarding the goals and practice of genetic counseling resulting in negative preconceptions of genetic testing was identified amongst all counselees. Counselors’ objective of respecting patient autonomy in decision-making, together with counselees’ misunderstanding of genetic risk data, caused uncertainty, frustration, and distrust. In addition, certain interesting variations were found between the different religious subgroups regarding their attitudes to genetic counseling.ConclusionsThe study highlights the miscommunications between HCPs, particularly counselors from the majority ethno-cultural group, and counselees from a minority ethno-cultural group. The need for nuanced understanding of the complex perspectives of minority ethno-cultural groups is also emphasized. Such an understanding may enhance the effectiveness of genetic testing and counseling among the Arab minority group while also genuinely empowering the personal autonomy of counselees from this minority group in Israel and other countries. (shrink)

Modern bioethics, which is based on Western moral philosophy and Western biomedical perspectives, has evolved within a complex, highly individualistic culture that draws a sharp distinction between church and state and tolerates a multitude of values. This discipline defines its principles in secular and objective terms that often are bewildering to people of non-Western origin. Despite much discourse, principlism remains the fundamental framework of bioethics. Principlism is held in such high regard that many bioethicists equate autonomy with personhood, as if (...) autonomy exists independently of specific beliefs and commitments.In addition, we continue to minimize the substantial differences in the way people of different cultures perceive, experience, and explain illness, although our views of the potential cultural limitations of Western medicine have grown and expanded in recent years. At the heart of it we continue to be tied to a biomedical focus that largely neglects the context of the situation. (shrink)

A linguistic barrier between healthcare professional and patient is a challenging experience for both parties. In many cases, the absence of formally trained medical interpreters necessitates that an informal interpreter, drawn from the immediate environment, be used to facilitate communication. While the presence of an interpreter in a medical interview raises many questions about the effectiveness of the communication between healthcare professional and patient, it also gives rise to new speculations revolving on patient rights, medical ethics and patient privacy. In (...) this article we examine the concept of communication competency in medical interviews, as well as translation theory, and link these theories to Western medical ethics in order to identify potential areas in which informal interpretation could impact on the patient. (shrink)

Modern bioethics, which is based on Western moral philosophy and Western biomedical perspectives, has evolved within a complex, highly individualistic culture that draws a sharp distinction between church and state and tolerates a multitude of values. This discipline defines its principles in secular and objective terms that often are bewildering to people of non-Western origin. Despite much discourse, principlism remains the fundamental framework of bioethics. Principlism is held in such high regard that many bioethicists equate autonomy with personhood, as if (...) autonomy exists independently of specific beliefs and commitments.In addition, we continue to minimize the substantial differences in the way people of different cultures perceive, experience, and explain illness, although our views of the potential cultural limitations of Western medicine have grown and expanded in recent years. At the heart of it we continue to be tied to a biomedical focus that largely neglects the context of the situation. (shrink)

Straipsnyje analizuojamos bioetikoje vyraujančio pagarbos asmens autonomijai principo prielaidos. Remiantis antropologų L. Dumont’o ir C. Geertzo darbais parodoma, kaip pagarbos asmens autonomijai principas yra susijęs su vakarietiška, krikščioniška, individualistine asmens samprata bei iš to plaukiančiu racionalumo reikšmės įtvirtinimu informuoto sutikimo koncepte. Taip pat ginama idėja, kad būtina atsižvelgti į rūpesčio etikos, pabrėžiančios emocijų svarbą moralėje ir paremtos reliacinio asmens prielaida, pasiūlytas įžvalgas. Straipsnyje parodoma, kaip rūpesčio etikoje pasiūlyti normatyviniai rūpesčio idealai gali būti pritaikomi bioetiniame kontekste – konceptualizuojant rūpestį medicinos sferoje (...) galima pritaikyti Bourdieu pasiūlytą habitus konceptą ir išryškinti ne tik tarpasmeninių santykių svarbą moraliniam vystymuisi, bet ir įvairias sociokultūrines bei istorines įtakas, lemiančias tam tikrus mūsų elgsenos modelius. (shrink)