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Personhood Diagnostics

December 20, 2016

This article examines an explanation circulating within a U.S. multidisciplinary pediatric pain clinic that links the neurobiology of functional pain disorders to desirable personal attributes such as smartness and creativity. Drawing on ethnographic observations and the analysis of video-recorded clinical interactions and focusing on two cases, I introduce the term personhood diagnostics to explore how … Read more

Attitudes Toward Genetic Research Review

December 20, 2016

Background: Researchers often relate personal experiences of difficulties and challenges with Institutional Review Board (IRB) review of their human genetic research protocols. However, there have been no studies that document the range and frequency of these concerns among researchers conducting human genetic/genomic studies. Methods: An online anonymous survey was used to collect information from human … Read more

Obstetrician-Gynecologists’ Objections to and Willingness to Help Patients Obtain an Abortion

December 20, 2016

OBJECTIVE: To describe obstetrician-gynecologists’ (ob-gyns’) views and willingness to help women seeking abortion in a variety of clinical scenarios. METHODS: We conducted a mailed survey of 1,800 U.S. ob-gyns. We presented seven scenarios in which patients sought abortions. For each, respondents indicated if they morally objected to abortion and if they would help patients obtain … Read more

Newborn Screening and Maternal Diagnosis

December 20, 2016

In a significant departure from established criteria for population screening, a 2006 report by the American College of Medical Geneticists (ACMG) argued that newborn screening may be justified by family and societal benefits even if the screened infant does not stand to benefit. The ACMG report has since been the backdrop for considerable debate about … Read more

Surveillance Impediments

December 20, 2016

Although the field of Surveillance Studies privileges detailed accounts of how and when surveillance occurs, it is also important to remain open to instances of aborted or failed surveillance and manifold impediments to surveillance. It is vital for researchers to document and theorize absence in order to better understand and perhaps mitigate the presence of … Read more

Ethical and Legal Issues in Enhancement Research on Human Subjects

December 20, 2016

The United States, along with other nations and international organizations, has developed an elaborate system of ethical norms and legal rules to govern biomedical research using human subjects. These policies govern research that might provide direct health benefits to participants and research in which there is no prospect for participant health benefits. There has been … Read more

Gender and the Science of Difference

December 20, 2016

How does contemporary science contribute to our understanding about what it means to be women or men? What are the social implications of scientific claims about differences between “male” and “female” brains, hormones, and genes? How does culture influence scientific and medical research and its findings about human sexuality, especially so-called normal and deviant desires … Read more

Patients-In-Waiting

December 20, 2016

What are the social consequences of the recent expansion of newborn screening in the United States? The adoption of new screening technologies has generated diagnostic uncertainty about the nature of screening targets, making it unclear not only whether a newborn will develop a disease but also what the condition actually is. Based on observations in … Read more

Developing Ethics Guidance for HIV Prevention Research

December 20, 2016

More than 25 years into the HIV epidemic, in excess of 2 million new infections continue to occur each year. HIV prevention research is crucial for groups at heightened risk for HIV, but the design and conduct of HIV prevention research with vulnerable populations worldwide raises considerable ethical challenges. The HIV Prevention Trials Network (HPTN) is … Read more