In the fifteen-year-long public saga of the Terri Schiavo case, one oftcited regrettable aspect of her health care noted in the media was her lack of advance care planning. The withdrawal of her gastrostomy tube was per the consent of her husband, Michael Schiavo, based on the substituted judgment of what she would have desired in a persistent vegetative state (PVS). Her parents, the Schindlers, attempted to assert that ending treatment in her state (which they disputed as not being PVS (...) violated her religious convictions.Many people were upset by the protracted public scrutiny of this private matter - citing the Schindler's public angst, the indignity of Ms. Schiavo's protracted treatment, the interference of politicians, and the financial injustice of devoting so much time and money to this case. All these points are less meritorious than this simple fact: an incapacitated patient had a substituted judgment rendered by her spouse (who was not found to have a conflict of interest),with corroboration by other witnesses for this refusal, and without any compelling contradictory evidence from the once-competent patient. (shrink)

Conley et al. (2023) analyze the attempts at public engagement (PE) by five governance groups. These projects were conducted by organizations that endorse both the goals and values of PE. The autho...

In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. (...) Personal webpages and on-line data sharing platforms such as Consent to Research, Free the Data, and Genomes Unzipped are being utilized to host and share genotypes, electronic health records and family history uploaded by individuals. Although personal genomic data sharing initiatives vary in nature, the emphasis on the individuals’ control on their data in order to benefit research and ultimately health care has seen as a key theme across these initiatives. In line with the growing practice of personal genomic data sharing, this paper aims to shed light on the potential challenges surrounding these initiatives. As in the course of these initiatives individuals are solicited to individually balance the risks and benefits of sharing their genomic data, their awareness of the implications of personal genomic data sharing for themselves and their family members is a necessity. Furthermore, given the sensitivity of genomic data and the controversies around their complete de-identifiability, potential privacy risks and harms originating from unintended uses of data have to be taken into consideration. (shrink)

This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the “index-person,” is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.The index-person can have several reasons to take an interest in obtaining her genetic information. She may want to know if she has a genetic predisposition for a disorder in order to take (...) measures for preventing its development. Even if there are no preventive measures, as is the case with Huntington's disease, for instance, she may still want to know whether she has the mutation, in order to adjust her future plans. These interests that an individual may have in obtaining genetic information have been used to argue in favour of a right to know. (shrink)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

This paper addresses the impact of genetic advances and understandings on our concept of the self and the individual. In particular it focuses on conceptions of the ‘autonomous individual’ in the post-Enlightenment tradition and in bioethics. It considers the ascendancy of the autonomous individual as the model of the self and describes the erosion of substantial concepts of the self and the reduction of the self to “the will”—with the accompanying values of freedom, choice and autonomy. This conception of the (...) self as an isolated, autonomous individual, characterised by acts of ‘will’ is then critiqued drawing on both theoretical sources, particularly the work of Iris Murdoch, and practical sources, namely the difficulties raised by genetics. (shrink)

Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious harm or death to (...) others. Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision—whether to disclose or not to disclose—will have on the familial relationship and the dynamics of the particular family. Adding this factor to the criteria usually advocated by lawyers and ethicists will facilitate reaching a sensitive decision, which recognises the various interests of family members beyond the risk to physical health. Taking this factor into account will require a process of deliberation both between doctors and patients, and in the family. It will also require a relaxation of medical confidentiality, as the family rather than the patient is gradually perceived as the unit of care. Moreover, adopting such a relational approach will accord with current views of doctors and patients who base their decision primarily on the nature of the familial relationship. (shrink)

This study aimed to determine the extent to which the principles of privacy and equality were observed during diagnostic genetic testing according to views held by patients or child patients' parents (n = 106) and by staff (n = 162) from three Finnish university hospitals. The data were collected through a structured questionnaire and analysed using the SAS 8.1 statistical software. In general, the two principles were observed relatively satisfactorily in clinical practice. According to patients/parents, equality in the post-analytic phase (...) and, according to staff, privacy in the pre-analytic phase, involved the greatest ethical problems. The two groups differed in their views concerning pre-analytic privacy. Although there were no major problems regarding the two principles, the differences between the testing phases require further clarification. To enhance privacy protection and equality, professionals need to be given more genetics/ethics training, and patients individual counselling by genetics units staff, giving more consideration to patients' world-view, the purpose of the test and the test result. (shrink)

Suppose that you have deeply personal information that you do not want to share. Further suppose that this information could help others, perhaps even saving their lives. Should you reveal the information or keep it secret? With the increasing prevalence of genetic testing, more and more people are finding themselves in this situation. Although a patient's genetic results are potentially relevant to all her biological family members, her first‐degree relatives—parents, children, and full siblings—are most likely to be affected. This is (...) especially true for genetic mutations—like those in the BRCA1 and BRCA2 genes—that are associated with a dramatically increased risk of disease. Fortunately, people are usually willing to share results with their at‐risk relatives. Occasionally, however, a patient refuses to disclose her findings to anyone outside her clinical team. Ethicists have written little on patients’ moral duties to their at‐risk relatives. Moreover, the few accounts that have been advanced are problematic. Some unnecessarily expose patients’ genetic information to relatives who are unlikely to benefit from it, and others fail to ensure that patients’ most vulnerable relatives are informed of their genetic risks. Patients’ duty to warn can be defended in a way that avoids these problems. I argue that the duty to share one's genetic results is grounded in the principle of rescue—the idea that one ought to prevent, reduce, or mitigate the risk of harm to another person when the expected harm is serious and the cost or risk to oneself is sufficiently moderate. When these two criteria are satisfied, a patient will most likely have a duty to warn. (shrink)

It is now being recognized across the spectrum of bioethics, and particularly in genetics and population ethics, that to focus on the individual person, and thereby neglect communities and the goods which accrue to them, is to fail to see all the ethically significant features of a range of ethical issues. This article argues that more work needs to be done in order for bioethics to respect not only goods (such as rights and interests) of communities per se, but also (...) to recognize the difference between different types of communities and their goods. The diversity of communities and the types of communal goods which accrue to them is first outlined. Following this, a basic distinction between two such types: aggregative and corporate community goods, is explained and defended, and it is then argued argue that this distinction is necessary to understand and address what and whom is ethically at stake in any situation. This is illustrated with the example of UK Biobank, the conclusion being that if current and future individual are to be respected then communal goods of both types must be recognized and respected in an effective bioethics. (shrink)

Physicians and families need to interact more meaningfully to clarify the values and preferences at stake in advance care planning. The current use of advance directives fails to respect patient autonomy. This paper proposes using the family covenant as a preventive ethics process designed to improve end-of-life planning by incorporating other family members—as agreed to by the patient and those family members—into the medical care dialogue. The family covenant formulates advance directives in conversation with family members and with the assistance (...) of a physician, thereby making advance directives more acceptable to the family, and more intelligible to other physicians. It adds the moral force of a promise to the obligation of respecting a patient’s preferences about end-of-life care. These negotiations between patient, family, and physician, from early planning phases through implementation, should greatly reduce the incidence of family disagreements on what the patient would have wanted. The family covenant ensures advance directive discussions within the family, promotes and respects the autonomy of other family members, and might even spur others in the family to complete advance directives through additional covenants. The family covenant holds the potential to transform moral quagmires into meaningful moral conversation. J Am Geriatr Soc 51:1155–1158, 2003. (shrink)

(2001). Family Physicians and the Family Covenant Model's Usefulness in Solving Genetic Testing Conflicts. The American Journal of Bioethics: Vol. 1, No. 3, pp. 28-29.

Genetic predispositions often concern not only individual persons, but also other family members. Advances in the development of genetic tests lead to a growing number of genetic diagnoses in medical practice and to an increasing importance of genetic counseling. In the present article, a number of ethical foundations and preconditions for this issue are discussed. Four different models for the handling of genetic information are presented and analyzed including a discussion of practical implications. The different models’ ranges of content reach (...) from a strictly autonomous position over self-governed arrangements in the practice of genetic counseling up to the involvement of official bodies and committees. The different models show a number of elements which seem to be very useful for the handling of genetic data in families from an ethical perspective. In contrast, the limitations of the standard medical attempt regarding confidentiality and personal autonomy in the context of genetic information in the family are described. Finally, recommendations for further ethical research and the development of genetic counseling in families are given. (shrink)

This paper will consider the right not to know in the context of psychiatric disorders. It will outline the arguments for and against acquiring knowledge about the results of genetic testing for conditions such as breast cancer and Huntington’s disease, and examine whether similar considerations apply to disclosing to clients the results of genetic testing for psychiatric disorders such as depression and Alzheimer’s disease. The right not to know will also be examined in the context of the diagnosis of psychiatric (...) disorders that are associated with stigma or for which there is no effective treatment. (shrink)

There has been much discussion about what, if any, legal and moral duties professionals have to disclose relevant genetic information to the family members of someone with an identified disease predisposing mutation. Here, we present a case report where dissemination of such a genetic test result did not take place within a family. In contrast to previous literature, there appeared to be no deliberate withholding of information, instead distant relatives were unable to communicate relevant information appropriately. When communication was facilitated (...) through the follow-up of a chance remark, the patient was able to avoid planned major surgery, with its attendant morbidity, and her high anxiety levels were much reduced. We believe this case highlights the need for an ongoing debate on how genetic services can best support patients and their families with disclosing relevant genetic information to other family members. (shrink)

This clinical case report illustrates the potential dilemmas that can arise from knowledge gained through genetic analysis. These conflicts require careful ethical analysis of presumed duties to protect patient privacy and maintain confidentiality, the duty to warn a second party of a health risk, and the duty of veracity. While the questions raised by genetic testing of one individual for disease that reveals potentially important information about relatives, such as risk for Huntington chorea or breast cancer, have been discussed, the (...) continuing expansion in our capacity for sophisticated genetic analysis continues to present new and challenging situations. The resolution of this case and others like it requires close collaboration among the treatment team, geneticists, and clinical ethicists. (shrink)

When considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.

This philosophical inquiry examines the nature of the technology of genetic predisposition testing and its relation to patients as whole persons. The bioethical principles of nonmaleficence, beneficence, autonomy and justice are judged insufficient to resolve issues associated with use. A new principle of ‘sustained being’, drawn from philosophical propositions of Pellegrino, is suggested. The new principle is suited to an evolving practice and is compatible with consequentialist, deontological and relational ethics theories. The notion of ‘taking care’ is related to nursing (...) in genetic health care to form a standard of conduct and a moral imperative to ‘safeguard being’. (shrink)

(2001). Family Covenants and Genetic Testing: Utilizing the Skills Of Counseling Professionals in Implementing Family Covenants. The American Journal of Bioethics: Vol. 1, No. 3, pp. 1-2.

Clinical geneticists are increasingly confronted with ethical tensions between their responsibilities to individual patients and to other family members. This paper considers the ethical implications of a “familial” conception of the clinical genetics role. It argues that dogmatic adherence to either the familial or to the individualistic conception of clinical genetics has the potential to lead to significant harms and to fail to take important obligations seriously.Geneticists are likely to continue to be required to make moral judgments in the resolution (...) of such tensions and may find it useful to have access to ethics training and support. (shrink)