Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.

This paper reports the social and medical characteristics of women resident in Aberdeen city who were sterilized in 195162 and 197152 women were offered sterilization, the majority being lower social class mothers with five or more children who were sterilized concurrently with abortion; the small number of upper social class women had one or two children and were sterilized for medical or obstetric reasons. By 196172, women themselves requested sterilization, the two–three child family was the norm, the proportion of upper (...) social class women continued to increase, and interval sterilization was gaining ground. (shrink)

Andrea Wiggins and John Wilbanks offer a rich and nuanced description of citizen science, which they define as “a range of participatory models for involving non-professionals as collaborators in s...

Are today's young adults gender rebels or returning to tradition? In Where the Millennials Will Take Us, Barbara J. Risman reveals the diverse strategies youth use to negotiate the ongoing gender revolution. Using her theory of gender as a social structure, Risman analyzes life history interviews with a diverse set of Millennials to probe how they understand gender and how they might change it. Some are true believers that men and women are essentially different and should be so. Others (...) are innovators, defying stereotypes and rejecting sexist ideologies and organizational practices. Perhaps new to this generation are gender rebels who reject sex categories, often refusing to present their bodies within them and sometimes claiming genderqueer identities. And finally, many youths today are simply confused by all the changes swirling around them. As a new generation contends with unsettled gender norms and expectations, Risman reminds us that gender is much more than an identity; it also shapes expectations in everyday life, and structures the organization of workplaces, politics, and, ideology. To pursue change only in individual lives, Risman argues, risks the opportunity to eradicate both gender inequality and gender as a primary category that organizes social life. (shrink)

U.S. regulations do not afford consistent protections to human research subjects. One complaint is that they focus on federally sponsored research, with private research covered only if it falls under the jurisdiction of the Food and Drug Administration. This paper examines a deeper problem: Even when the regulations do apply, they still do not afford consistent standards of protection. The U.S. Common Rule and related FDA regulations lack a workable regulatory control mechanism.

In this article, the author argues that we need to conceptualize gender as a social structure, and by doing so, we can better analyze the ways in which gender is embedded in the individual, interactional, and institutional dimensions of our society. To conceptualize gender as a structure situates gender at the same level of general social significance as the economy and the polity. The author also argues that while concern with intersectionality must continue to be paramount, different structures of inequality (...) have different constructions and perhaps different influential causal mechanisms at any given historical moment. We need to follow a both/and strategy to understand gender structure, race structure, and other structures of inequality as they currently operate while also systematically paying attention to how these axes of domination intersect. Finally, the author suggests we pay more attention to doing research and writing theory with explicit attention to how our work can indeed help transform as well as inform society. (shrink)

The particular design of any technology may have profound social implications. Computing technologies are deeply intermeshed with the activities of daily life, playing an ever more central role in how we work, learn, communicate, socialize, and participate in government. Despite the many ways they have improved life, they cannot be regarded as unambiguously beneficial or even value-neutral. Recent experience shows they can lead to unintended but harmful consequences. Some technologies are thought to threaten democracy through the spread of propaganda on (...) online social networks, or to threaten privacy through the aggregation of datasets that include increasingly personal information, or to threaten justice when machine learning is used in such high-stakes, decision-making contexts as loan application reviews, employment procedures, or parole hearings. It is insufficient to ethically assess technology after it has produced negative social impacts, as has happened, for example, with facial recognition software that discriminates against people of color and with self-driving cars that are unable to cope with pedestrians who jay-walk. Developers of new technologies should aim to identify potential harmful consequences early in the design process and take steps to eliminate or mitigate them. This task is not easy. Designers will often have to negotiate among competing values—for instance, between efficiency and accessibility for a diverse user population, or between maximizing benefits and avoiding harm. There is no simple recipe for identifying and solving ethical problems. -/- Computer science education can help meet these challenges by making ethical reasoning about computing technologies a central element in the curriculum. Students can learn to think not only about what technology they could create, but also whether they should create that technology. Learning to reason this way requires courses unlike those currently standard in computer science curricula. A range of university courses on topics in areas of computing, ethics, society and public policy are emerging to meet this need. Some cover computer science broadly, while others focus on specific problems like privacy and security; typically, these classes exist as stand-alone courses in the computer science curriculum. Others have integrated ethics into the teaching of introductory courses on programming, artificial intelligence, and human-computer interaction. (shrink)

my comments focus on jane addams's methode of ethical deliberation, as understood through Dr. Fischer's detailed explication, especially as offered in chapter 2, "An Evolutionary Method of Ethical Deliberation." As Fischer points out, this explication is of one iteration of Jane Addams's method, a particularized response to how Jane Addams believed the settlement residents should respond to the many labor strikes in Chicago during the 1890s. I offer my comments from the perspective of both a scholar, seeking to better apply (...) Addams's insights to my own work, and an educator, seeking to better integrate Addams's work into my teaching. My hope is to flesh out more clearly my own understanding and, in so doing... (shrink)

For a biological anthropologist interested in the prehistory of religion, J. Wentzel van Huyssteen's book is welcome and resonant. Van Huyssteen's central thesis is that humans' capacity for spirituality emerges from a transformation of cognition and emotions that takes place in the symbolic realm, within Homo sapiens and apart from biology. To his thesis I bring to bear three areas of response: the abundant cognitive and emotional capacities of living apes and extinct hominids; the role of symbolic ritual in the (...) evolutionary history of Homo sapiens; and the closely intertwined nature of biology and culture in the workings of evolutionary change. (shrink)

To return to last week’s yammering, I want to say that I've been getting some interesting responses to the personal/political/feminist article, responses that are underlining for me the fact that I'm still pretty conflicted about defining feminism. A lot of you have said that feminism is a belief set like a religion, and that because of this there will naturally be a certain amount of disagreement among feminists and feminisms. I agree on the second point: debate is essential to learning, (...) to be sure. And I certainly wasn’t arguing that there should be any sort of unchanging rule-book. Quite the contrary—I believe feminists should disagree with one another, debate one another, learn from each other. (Can you say feminist praxis?) (3.5.98) 1. (shrink)

Studies of neuropsychological patients are relevant to models of how long-term memories are stored. If amnesia is considered a binding deficit and not a difficulty in transferring information from short-term to long-term memory, it is unclear why context-free semantic learning is impaired. Also the model should account for the reverse temporal gradient seen in patients with semantic dementia.

The individual right of access to one’s own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and research software used in citizen science often fall outside the HIPAA Privacy Rule, leaving participants without HIPAA’s right of access to one’s own data. Absent state laws requiring access, the law of contract, as reflected in end-user agreements and terms of service, governs individuals’ ability to find out how much data is being stored and how (...) it might be shared with third parties. Efforts to address this problem by establishing norms of individual access to data from mobile health research unfortunately can run afoul of the FDA’s investigational device exemption requirements. (shrink)

Ontogeny, specifically the role of language in the human family now and in prehistory, is central to Locke & Bogin's (L&B's) thesis in a compelling way. The unique life-history stages of childhood and adolescence, however, must be interpreted not only against an exceptionally “high quality” human infancy but also in light of the evolution of co-constructed, emotionally based communication in ape, hominid, and human infancy.

Frederick Douglass (1818?1895) was the most significant African?American leader of the nineteenth century. Secretly acquiring literacy as a slave, he grew into a brilliant speaker whose essential genius was to articulate and impeach the ideologies of the day. Douglass was one of the foremost defenders of black emancipation and women?s rights. He developed a dual philosophy of resistance and integration. He taxed blacks with the need for self?reliance; he recalled whites to the justice of racial equality. Freedom would be won (...) by securing to all workers, white or black, the fruit of their labour. Economic progress and enhanced social equality would be achieved by hard work, thrift, education and sobriety. Underlying all his thought and action was an ideology of free labour conjoined with republicanism. He early embraced the ideal of moral suasion. As the prospect of civil war loomed, he accepted the legitimacy of violence ? in self?defence, and to liberate the slaves. (shrink)

Clinical ethics consultants represent a multidisciplinary group of scholars and practitioners with varied training backgrounds, who are integrated into a medical environment to assist in the provision of ethically supportable care. Little has been written about the degree to which such consultants are accountable for the patient care outcome of the advice given. We propose a model for examining degrees of internally motivated accountability that range from restricted to unbounded accountability, and support balanced accountability as a goal for practice. Finally, (...) we explore implications of this model for training of clinical ethics consultants from diverse academic backgrounds, including those disciplines that do not have a formal code of ethics relating to clinical practice. (shrink)

Regulatory policy for genomic testing may be subject to biases that favor reliance on existing regulatory frameworks even when those frameworks carry unintended legal consequences or may be poorly tailored to the challenges genomic testing presents. This article explores three examples drawn from genetic privacy regulation, oversight of clinical uses of genomic information, and regulation of genomic software. Overreliance on expedient regulatory approaches has a potential to undercut complete and durable solutions.

This article argues that individuals paradigms have predominated social scientific explanations for gendered behavior in intimate relationships but that a microstructural paradigm adds necessary additional information. The results of a study designed to test the relative strengths of individualist and microstructural explanations for “mothering behavior” are presented. The microstructural hypothesis is that single fathers will adopt parental behavior that more closely resembles that of women who mother than that of married fathers. Parenting behaviors of single fathers, single mothers, married parents (...) with mothers at home, and married two-paycheck couples are compared. Overall, the hypothesis is supported. The article ends with a discussion of the implications of the microstructural perspective for social change in a feminist direction. (shrink)

Barbara J. Blodgett proposes a practical sexual ethic for adolescent girls based on a discourse of vulnerability and trust rather than one of erotic liberation. Her work directly challenges feminist theologies of the erotic, which seek to establish the erotic as unquestionably freeing and empowering.Blodgett declares that inconsistent worlds of meaning surround girls' moral deliberation about sexual activity despite their sincere yearning for guidance.This ground-breaking book: -- Critiques feminist theologies of the erotic-- Draws upon actual narratives of adolescent girls (...) about sexuality and romance-- Uses a psychoanalytic theory for Christian ethics-- Points the way to an alternative model of sexual ethics in theological ethics, while factoring in the stark realities of gender, power, and cultureBlodgett suggests relationships are either stabilized by the exercise of trust or friendly distrust. (shrink)

Cultural critics of the “feminization of love” have argued that heterosexual love has been feminized by a stress on emotional expressivity that masks “masculine” love, with its greater emphasis on instrumental behaviors. Using survey data, this article examines the extent to which the feminization-of-love hypothesis can be extended to same-sex friendships. Data analyses revealed that women's friendships were more expressive than men's only when a narrow, positive definition of expressivity was employed; men's friendships were found to be more aggressive, but (...) no more instrumental, than those of women. These and other findings support the conclusion that women's friendships are more similar to the cultural images of heroic friendship and sisterhood than to the narrower image of feminized love. (shrink)