Suchergebnisse

Using international human rights framework to study bioethics -- Children's bioethics in the Convention on the Rights of the Child : historical overview of the drafting process -- Traditional bodily practices : case studies -- Children's bioethics and the framework of analysis -- Biomedical practices and the child : rights in question -- Rights discourse, children and bioethics -- Broadening the lens : genetic manipulation -- Conclusion

This article explores the practice of gamete donation in the U.S. having in mind the larger question of what do we as a society owe children born as a result (donor-conceived children). Do recipient-parents have a duty to tell their donor-conceived child about his/her genetic origins? Should the identity of the donor be disclosed or remain anonymous? Does the child have a right to know her conception story and to receive information, including identifying information, about the donor? Furthermore, if a donor-conceived child has a right to know, who has the duty to tell her/him about it? The Article underscores the ethical, legal and social dilemmas that arise, comparing and contrasting with international developments in this arena. It highlights the market-based and more specific medical justifications for regulating this field, explores the emerging so-called right of the child to know his/her genetic origins ("the right to know"), and considers the challenges such a right evokes to existing legal culture and principles of medical ethics in the U.S. as well as other broader societal implications of such a right.

This article examines the impact of the scientific revolution on the family rights of transgender individuals from an international human rights perspective. It reviews how the European Court of Human Rights has responded to quandaries arising in this context and observes the inequalities that surface at the intersection between law, gender identities, culture, and science with regard to transgender family relations. To close the gaps, the article suggests pursuing family rights from a different venue: a relational approach to the universal right to enjoy scientific progress and its application under Article 15 of the International Covenant on Economic, Social, and Cultural Rights.

Human Rights and Disability Advocacy brings together perspectives from civil society representatives who played key roles in the drafting of the Convention on the Rights of Persons with Disabilities, shedding light on the emergent practices of a "new diplomacy" and the larger enterprise of human rights advocacy at the international level.

<b><i>Purpose:</i></b> Returning genetic results to research participants is gaining momentum in the USA. It is believed to be an important step in exploring the impact of efforts to translate findings from research to bedside and public health benefits. Some also hope that this practice will incentivize research participation, especially among people from historically marginalized communities who are commonly underrepresented in research. However, research participants' interest in receiving nongenomic medical and nonmedical results that may emerge from precision medicine research (PMR) is understudied and no study to date has explored the views of people with disabilities about return of genomic and nongenomic results from PMR. <b><i>Methods:</i></b> In a national online survey of people with disabilities, participants were queried about their interest in receiving biological, environmental, and lifestyle results from PMR (<i>n</i> = 1,294). Analyses describe findings for all of the participants and comparisons for key demographic characteristics and disability subgroups. <b><i>Results:</i></b> The participants expressed high interest in biological and health-related results and less interest in other findings. However, the interest among the study participants was lower than that found in comparable studies of the general population. Moreover, this interest varied significantly across gender, race/ethnicity, and disability subgroups. Possible reasons for these differences are discussed. <b><i>Conclusion:</i></b> Insofar as return of results from PMR may impact translational efforts, it is important to better understand the role of sociomedical marginalization in decisions about return of results from PMR and to develop strategies to address existing barriers.

<b><i>Objective:</i></b> Precision medicine raises hope for translating genetic-based knowledge about psychiatric risks into mental health benefits by motivating health-related, risk-reducing behaviors. Teenagers (ages 14–17) are an important age-group to engage in preventive efforts but, their views about psychiatric genetics are understudied. <b><i>Method:</i></b> An online survey with a nationally representative sample of teenagers (<i>n</i> = 417) was conducted. Participants were randomly assigned to receive 1 of 2 handouts, 1 emphasizing the genetic underpinnings of psychiatric conditions; the other agency-oriented and focusing on gene-environment interactions. Survey questions queried their views about behavioral changes in response to psychiatric genetic risk information and expressed willingness to undertake them. Participants' decision-making characteristics (i.e., self-efficacy, empowerment, intolerance of uncertainty, and sensation-seeking) were assessed at baseline. <b><i>Results:</i></b> Teenagers strongly valued the information provided and its potential usefulness for their mental health. Information about psychiatric genetics alone impacted views about the causes of mental illness. Contrary to our hypothesis, the type of handout did not impact participants' expressed willingness to make behavioral changes to reduce their risk of developing a psychiatric condition, but their sense of empowerment played a key role in their responses. <b><i>Conclusion:</i></b> Educating teenagers about gene-environment interactions may help facilitate the translational efforts of precision psychiatry. Research with teenagers across racial/ethnic groups, especially those with family histories, is needed to better understand the factors that impact teenagers' empowerment in psychiatric genomic settings and to identify measures, including the best enablers of empowerment (e.g., educators, parents), which would allow them to reap the benefits of precision psychiatry.