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Ethical, Legal, and Social Concerns About Expanded Newborn Screening

December 20, 2016

Technology will make it possible to screen for fragile X syndrome and other conditions that do not meet current guidelines for routine newborn screening. This possibility evokes at least 8 broad ethical, legal, and social concerns: (1) early identification of fragile X syndrome, an “untreatable” condition, could lead to heightened anxiety about parenting, oversensitivity to … Read more

Co-Ordinating ‘Ethical’ Clinical Trials

December 20, 2016

Change in the way new drugs are developed, including the privatisation of clinical trials, has altered the arrangement and roles of healthcare professions. In this paper I examine one aspect of this change: the role of research coordinators in the conduct of contract research in the United States. My focus on coordinators highlights the ethical … Read more

The Many Meanings of Care in Clinical Research

December 20, 2016

The conduct of clinical research often involves two distinguishable sets of relationships: the researcher-subject relationship, and the clinician-patient relationship. Some scholars argue that being a patient in a clinical care setting and a subject in a research study are so different that anything that would promote in subjects the view that they are in clinician-patient … Read more

(Book Review) Narrating the New Predictive Genetics

December 20, 2016

In her monograph, Monica Konrad is engaged in several important intellectual projects that compete for centrality in the analysis of her ethnographic data. These projects include the following contributions: adding to the empirical record regarding genetic testing and decision-making, challenging the boundaries of bioethics discourse, arguing for engaged scholarship to inform developments in public policy, … Read more

AIDS Care and Treatment in Sub-Saharan Africa

December 20, 2016

With the advent of new AIDS treatment initiatives such as the World Health Organization’s “3 by 5” program and the United States’ “President’s Emergency Plan for AIDS Relief,” the ethical questions about AIDS care in the developing world have changed. No longer are they fundamentally about the conduct of research; now, we must turn our … Read more

Factors That Affect Infertility Patients’ Decisions About Disposition of Frozen Embryos

December 20, 2016

OBJECTIVE: To describe factors that affect infertility patients’ decision making regarding their cryopreserved embryos. DESIGN: Forty-six semistructured in-depth interviews of individuals and couples participating in IVF programs. SETTING: Two major southeastern academic medical centers. PATIENT(S): Fifty-three individuals, including 31 women, 8 men, and 7 couples. MAIN OUTCOME MEASURE(S): Qualitative analysis of interview transcripts. INTERVENTION (S): … Read more

Is It Ethical to Study What Ought Not to Happen?

December 20, 2016

In the Democratic Republic of Congo, only an estimated 2% of all AIDS patients have access to treatment. As AIDS treatment access is scaled-up in the coming years, difficult rationing decisions will have to be made concerning who will come to gain access to this scarce medical resource. This article focuses on the position, expressed … Read more

Ethnographic Approaches to Child Care Research

December 20, 2016

This article presents the findings from a review of ethnographic approaches to child care research. Ethnographic research has enhanced researcher and practitioner understandings of the child care environment by providing entry into the child care center as an important site not only of development and education, but also of social reproduction and enculturation. The extant … Read more

Antiaging Medicine and Mild Cognitive Impairment

December 20, 2016

The claim that aging itself is treatable or even preventable has repeatedly been made over the centuries. Antiaging medicine is the current leader of approaches that even claim that geriatrics as a discipline will become increasingly unnecessary. The concept of mild cognitive impairment (MCI) as a condition intermediate between normal cognitive aging and Alzheimer’s disease … Read more