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"Settersten, Richard A."
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What's Going on with Young People Today? The Long and Twisting Path to Adulthood
Richard Settersten and Barbara Ray examine the lengthening transition to adulthood over the past several decades, as well as the challenges the new schedule poses for young people, families, and society. The authors begin with a brief history of becoming an adult, nothing that the schedule that youth follow to arrive at adulthood changes to meet the social realities of each era. For youth to leave home at an early age during the 1950s, for example, was \"normal\" because opportunities for work were plentiful and social expectations of the time reinforced the need to do so. But the prosperity that made it possible for young adults of that era to move quickly into adult roles did not last. The economic and employment uncertainties that arose during the 1970s complicated enormously the decisions that young adults had to make about living arrangements, educational investments, and family formation. The authors next take a closer look at changes in the core timing shifts in the new transition—the lengthening time it now takes youth to leave home, complete school, enter the workforce, marry, and have children. They stress that today's new schedule for attaining independence leaves many families overburdened as they support their children for an extended period. The continued need to rely on families for financial assistance, the authors say, exacerbates the plight of young people from a variety of vulnerable backgrounds. It also raises complex questions about who is responsible for the welfare of young people and whether the risks and costs newly associated with the early adult years should be absorbed by markets, by families, or by governments. Settersten and Ray stress that the longer transition to adulthood strains not only families but also the institutions that have traditionally supported young Americans in making that transition—such as residential colleges and universities, community colleges, military service, and national service programs. They emphasize the need to strengthen existing social institutions and create new ones to reflect more accurately the realities of a longer and more complex passage into adult life.
Journal Article
From \Personalized\ to \Precision\ Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine
Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care.
Journal Article
Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives
Background
The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs are embracing this populist rhetoric to encourage wider public participation.
Discussion
We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric.
Summary
We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance.
Journal Article
Some Ways in Which Neighborhoods, Nuclear Families, Friendship Groups, and Schools Jointly Affect Changes in Early Adolescent Development
This study assessed some ways in which schools, neighborhoods, nuclear families, and friendship groups jointly contribute to positive change during early adolescence. For each context, existing theory was used to develop a multiattribute index that should promote successful development. Descriptive analyses showed that the four resulting context indices were only modestly intercorrelated at the individual student level (N = 12,398), but clustered more tightly at the school and neighborhood levels (N = 23 and 151 respectively). Only for aggregated units did knowing the developmental capacity of any one context strongly predict the corresponding capacity of the other contexts. Analyses also revealed that each context facilitated individual change in a success index that tapped into student academic performance, mental health, and social behavior. However, individual context effects were only modest in size over the 19 months studied and did not vary much by context. The joint influence of all four contexts was cumulatively large, however, and because it was generally additive in form, no constellation of contexts was identified whose total effect reliably surpassed the sum of its individual context main effects. These results suggest that achieving significant population changes in multidimensional student growth during early adolescence most likely requires both theory and interventions that are explicitly pan-contextual.
Journal Article
Personalized Genomic Medicine and the Rhetoric of Empowerment
A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine's vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime “is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late stage disease.” What is revolutionary about this kind of medicine, its advocates maintain, is that it promises to resolve that crisis by simultaneously increasing the ability to be “personalized,” “predictive,” “preventive,” and “participatory.” Some call personalized genomic medicine “P4 Medicine,” inscribing these cardinal virtues into the movement's name. All of these putative virtues have interesting implications for the future of health care. In this essay, we are especially interested in the claims that personalized medicine will lead to a more “participatory” or “patient‐centered” approach to health care, in which patients are “empowered” to take more personal control over their care. The rhetoric of patient empowerment is nothing new in health care, but personalized medicine is an interesting case study because it portrays empowerment as one of its key virtues and as a mechanism for fixing the health care “crisis.”
Journal Article
Gatekeepers or Intermediaries? The Role of Clinicians in Commercial Genomic Testing
Many commentators on \"direct-to-consumer\" genetic risk information have raised concerns that giving results to individuals with insufficient knowledge and training in genomics may harm consumers, the health care system, and society. In response, several commercial laboratories offering genomic risk profiling have shifted to more traditional \"direct-to-provider\" (DTP) marketing strategies, repositioning clinicians as the intended recipients of advertising of laboratory services and as gatekeepers to personal genomic information. Increasing popularity of next generation sequencing puts a premium on ensuring that those who are charged with interpreting, translating, communicating and managing commercial genomic risk information are appropriately equipped for the job. To shed light on their gatekeeping role, we conducted a study to assess how and why early clinical users of genomic risk assessment incorporate these tools in their clinical practices and how they interpret genomic information for their patients.
We conducted qualitative in-depth interviews with 18 clinicians providing genomic risk assessment services to their patients in partnership with DNA Direct and Navigenics. Our findings suggest that clinicians learned most of what they knew about genomics directly from the commercial laboratories. Clinicians rely on the expertise of the commercial laboratories without the ability to critically evaluate the knowledge or assess risks.
DTP service delivery model cannot guarantee that providers will have adequate expertise or sound clinical judgment. Even if clinicians want greater genomic knowledge, the current market structure is unlikely to build the independent substantive expertise of clinicians, but rather promote its continued outsourcing. Because commercial laboratories have the most \"skin in the game\" financially, genetics professionals and policymakers should scrutinize the scientific validity and clinical soundness of the process by which these laboratories interpret their findings to assess whether self-interested commercial sources are the most appropriate entities for gate-keeping genomic interpretation.
Journal Article
Subjective Aging and New Complexities of the Life Course
How individuals evaluate their aging must be understood within a context of structural and cultural forces that transformed the human life course over the last century. This chapter applies social science perspectives to explore how structural and cultural dynamics shape the contour and content of aging and affect individual expectations and evaluations. The starting assumption is that subjective aging is largely intersubjective: How human beings experience aging is shaped by shared meanings, accumulated through lifelong socialization and feedback from persons around them. The chapter examines how subjective aging is connected to societal change in demographic and epidemiological conditions, the cultural shift toward individualization, and complex contingencies related to social relationships in contemporary life. It examines markers of becoming and being old and the degree to which subjective aging is similar or different for women and men. It closes with a discussion of how social factors can better be brought into research on subjective aging, and of how gerontologists are resistant participant observers in their own aging process and their communication about aging.
Journal Article
Some Things I Have Learned About Aging by Studying the Life Course
“Aging” and the “life course” are distinct but complementary phenomena that inform one another. Building on this insight, this essay conveys some lessons the author has learned about aging by studying the life course. These include that (1) age is a salient dimension of individual identity and social organization; (2) a reconfigured life course brings reconfigured aging; (3) old age is a highly precarious phase of life; (4) difference and inequality are not the same, but both can accumulate over time; (5) aging is gendered; (6) aging is interpersonal, and “independence” is an illusion; (7) “choice” and “responsibility” can be dirty words; (8) much of aging is in the mind—it is imagined and anticipated; and (9) history leaves its footprints on aging, and the future of aging is already here. These lessons culminate in a final insight: that to understand personal aging, gerontologists must look beyond the personal, for much of the relevant action is to be found in social experience.
Journal Article
Are Conceptions of Adulthood Universal and Unisex? Ages and Social Markers in 25 European Countries
Despite ample research on behavioral aspects of the transition to adulthood, few comparative studies have focused on \"subjective\" facets. Using data from the European Social Survey, we probe similarities and differences in conceptions of adulthood for men and women in twenty-five European countries. We examine perceptions of the age of adulthood and the importance of four social markers (leaving home, having a full-time job, living with a partner or spouse, and becoming a parent). Results reveal a shared European idea about age, with men consistently reaching adulthood later than women. The significance of various markers, however, shows greater heterogeneity across nations. Country differences go beyond welfare state classification and underscore the importance of value systems. Conceptions for men and women are surprisingly similar. While economic independence matters more for men's lives, it is nonetheless salient for women. Even more, family formation now seems a unisex organizer of the life course.
Journal Article