"Why did I get that part of you?" Understanding addiction genetics through family history.

Scientists have sought to uncover the genetic bases of many diseases and disorders. In response, scholars defined "geneticization" to describe genetic infiltration of understandings of health and illness. In our research, we interviewed 63 individuals in addiction treatment programs to identify what form of geneticization best fits individuals' description of their own addiction. Individuals' narratives of their lives, which include family history and are influenced by cultural and structural factors, affect respondents' reactions to a potential genetic basis of addiction. Most who had a family history of addiction subscribed to a notion that addiction "runs in families," while most who lacked a family history of addiction used this fact to reject the notion of genetic inheritance of addiction. We conclude that though we see elements of several different versions of geneticization, Nikolas Rose's version, that genetics affects peoples' perceptions of addiction in small but important ways, best describes our respondents' views.

The Influence of Psychosocial and Cognitive Factors on Perceived Threat of Alzheimer's Disease.

This study explored psychosocial and cognitive predictors of perceived threat of Alzheimer's disease (AD). Respondents were 1641 adults (mean age: 64.4; 54% female; 82% white) who completed a module in the Health and Retirement Study, a nationally representative survey of adults aged ≥50. Findings show that perceived threat was significantly higher for those aged 50 to 64 ( P < .001) and 65 to 74 ( P < .05) than for those ≥75. Respondents with a family history of AD had significantly greater perceived threat ( P < .001) than those with no experience. Stronger endorsement of the beliefs that stress ( P < .01) or genetics ( P < .01) are important AD risk factors was significantly associated with greater perceived threat, as was having more depressive symptoms ( P < .01), poorer self-rated memory ( P < .01), and lower cognitive function ( P < .01). Personal experience moderated the relationship between perceived threat and 2 variables: age and self-rated memory. Understanding perceived AD threat may inform practice and policies centered on early and accurate diagnosis.

"I don't have to know why it snows, I just have to shovel it!": Addiction Recovery, Genetic Frameworks, and Biological Citizenship.

The gene has infiltrated the way citizens perceive themselves and their health. However, there is scant research that explores the ways genetic conceptions infiltrate individuals' understanding of their own health as it relates to a behavioral trait, like addiction. Do people seeking treatment for addiction ground their self-perception in biology in a way that shapes their experiences? We interviewed 63 participants in addiction treatment programs, asking how they make meaning of a genetic understanding of addiction in the context of their recovery, and in dealing with the stigma of addiction. About two-thirds of people in our sample did not find a genetic conception of addiction personally useful to them in treatment, instead believing that the cause was irrelevant to their daily struggle to remain abstinent. One-third of respondents believed that an individualized confirmation of a genetic predisposition to addiction would facilitate their dealing with feelings of shame and accept treatment. The vast majority of our sample believed that a genetic understanding of addiction would reduce the stigma associated with addiction, which demonstrates the perceived power of genetic explanations in U.S. society. Our results indicate that respondents (unevenly) ground their self-perception of themselves as an addicted individual in biology.

The media and behavioral genetics: Alternatives coexisting with addiction genetics.

To understand public discourse in the U.S. on genetic causation of behavioral disorders, we analyzed media representations of genetic research on addiction published between 1990 and 2010. We conclude first that the media simplistically represent biological bases of addiction and willpower as being mutually exclusive: behaviors are either genetically determined, or they are a choice. Second, most articles provide only cursory or no treatment of the environmental contribution. A media focus on genetics directs attention away from environmental factors. Rhetorically, media neglect the complexity underlying of the etiology of addiction and direct focus back toward individual causation and responsibility.

How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study.

AIM: To assess customer comprehension of health-related personal genomic testing (PGT) results. METHODS: We presented sample reports of genetic results and examined responses to comprehension questions in 1,030 PGT customers (mean age: 46.7 years; 59.9% female; 79.0% college graduates; 14.9% non-White; 4.7% of Hispanic/Latino ethnicity). Sample reports presented a genetic risk for Alzheimer's disease and type 2 diabetes, carrier screening summary results for >30 conditions, results for phenylketonuria and cystic fibrosis, and drug response results for a statin drug. Logistic regression was used to identify correlates of participant comprehension. RESULTS: Participants exhibited high overall comprehension (mean score: 79.1% correct). The highest comprehension (range: 81.1-97.4% correct) was observed in the statin drug response and carrier screening summary results, and lower comprehension (range: 63.6-74.8% correct) on specific carrier screening results. Higher levels of numeracy, genetic knowledge, and education were significantly associated with greater comprehension. Older age (≥ 60 years) was associated with lower comprehension scores. CONCLUSIONS: Most customers accurately interpreted the health implications of PGT results; however, comprehension varied by demographic characteristics, numeracy and genetic knowledge, and types and format of the genetic information presented. Results suggest a need to tailor the presentation of PGT results by test type and customer characteristics.

Unwarranted optimism in media portrayals of genetic research on addiction overshadows critical ethical and social concerns.

The cost of addiction in the United States, in combination with a host of new tools and techniques, has fueled an explosion of genetic research on addiction. Because the media has the capacity to reflect and influence public perception, there is a need to examine how treatments and preventive approaches projected to emerge from addiction genetic research are presented to the public. The authors conducted a textual analysis of 145 news articles reporting on genetic research on addiction from popular print media in the United States and from popular news and medical internet sites. In articles that report on prevention, the media emphasize vaccine development and identifying individuals at genetic risk through population screening. Articles that emphasize treatment often promote current pharmaceutical solutions and highlight the possibility of tailoring treatments to specific genetic variants. The authors raise concerns about the tendency of this coverage to focus on the benefits of pharmaceutical treatments and genetic-based approaches to prevention while neglecting or downplaying potential risks and ethical issues. This analysis suggests a need for more balanced, evidence-based media reporting on the potential outcomes of genetic research.

Challenges in translational research: the views of addiction scientists.

OBJECTIVES: To explore scientists' perspectives on the challenges and pressures of translating research findings into clinical practice and public health policy. METHODS: We conducted semi-structured interviews with a purposive sample of 20 leading scientists engaged in genetic research on addiction. We asked participants for their views on how their own research translates, how genetic research addresses addiction as a public health problem and how it may affect the public's view of addiction. RESULTS: Most scientists described a direct translational route for their research, positing that their research will have significant societal benefits, leading to advances in treatment and novel prevention strategies. However, scientists also pointed to the inherent pressures they feel to quickly translate their research findings into actual clinical or public health use. They stressed the importance of allowing the scientific process to play out, voicing ambivalence about the recent push to speed translation. CONCLUSIONS: High expectations have been raised that biomedical science will lead to new prevention and treatment modalities, exerting pressure on scientists. Our data suggest that scientists feel caught in the push for immediate applications. This overemphasis on rapid translation can lead to technologies and applications being rushed into use without critical evaluation of ethical, policy, and social implications, and without balancing their value compared to public health policies and interventions currently in place.

Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.

Direct-to-consumer genetic testing (DTC-GT) has sparked much controversy and undergone dramatic changes in its brief history. Debates over appropriate health policies regarding DTC-GT would benefit from empirical research on its benefits, harms, and limitations. We review the recent literature (2011-present) and summarize findings across (1) content analyses of DTC-GT websites, (2) studies of consumer perspectives and experiences, and (3) surveys of relevant health care providers. Findings suggest that neither the health benefits envisioned by DTC-GT proponents (e.g., significant improvements in positive health behaviors) nor the worst fears expressed by its critics (e.g., catastrophic psychological distress and misunderstanding of test results, undue burden on the health care system) have materialized to date. However, research in this area is in its early stages and possesses numerous key limitations. We note needs for future studies to illuminate the impact of DTC-GT and thereby guide practice and policy regarding this rapidly evolving approach to personal genomics.

Addiction: Current Criticism of the Brain Disease Paradigm.

To deepen understanding of efforts to consider addiction a "brain disease," we review critical appraisals of the disease model in conjunction with responses from in-depth semistructured stakeholder interviews with (1) patients in treatment for addiction and (2) addiction scientists. Sixty-three patients (from five alcohol and/or nicotine treatment centers in the Midwest) and 20 addiction scientists (representing genetic, molecular, behavioral, and epidemiologic research) were asked to describe their understanding of addiction, including whether they considered addiction to be a disease. To examine the NIDA brain disease paradigm, our approach includes a review of current criticism from the literature, enhanced by the voices of key stakeholders. Many argue that framing addiction as a disease will enhance therapeutic outcomes and allay moral stigma. We conclude that it is not necessary, and may be harmful, to frame addiction as a disease.

The experience of addiction as told by the addicted: incorporating biological understandings into self-story.

How do the addicted view addiction against the framework of formal theories that attempt to explain the condition? In this empirical paper, we report on the lived experience of addiction based on 63 semi-structured, open-ended interviews with individuals in treatment for alcohol and nicotine abuse at five sites in Minnesota. Using qualitative analysis, we identified four themes that provide insights into understanding how people who are addicted view their addiction, with particular emphasis on the biological model. More than half of our sample articulated a biological understanding of addiction as a disease. Themes did not cluster by addictive substance used; however, biological understandings of addiction did cluster by treatment center. Biological understandings have the potential to become dominant narratives of addiction in the current era. Though the desire for a "unified theory" of addiction seems curiously seductive to scholars, it lacks utility. Conceptual "disarray" may actually reflect a more accurate representation of the illness as told by those who live with it. For practitioners in the field of addiction, we suggest the practice of narrative medicine with its ethic of negative capability as a useful approach for interpreting and relating to diverse experiences of disease and illness.

Reasons for non-use of condoms among men who have sex with men: a comparison of receptive and insertive role in sex and online and offline meeting venue.

This study examined reasons for non-use of condoms among an online survey sample of 462 non-condom using men who have sex with men to: (1) identify major domains, themes and categories encompassing reasons for non-use of condoms and (2) examine whether reasons varied by role-in-sex (insertive or receptive) and meeting venue (online or offline). A thematic analysis was completed on participant responses to an open-ended question about reasons for non-condom use. Preference for not using condoms and contextual factors were the top two reasons given for not using condoms, followed by a reasoned judgment based on risk assessment, relationship status and interpersonal communication. No major differences were found between men who reported non-condom use at last receptive and insertive anal intercourse. By contrast when meeting online, men were more likely to report reasons for non-condom use that corresponded to individual preference and mutual agreement not to use condoms. When meeting offline, men were more likely to cite reasons related to context and relationships. In developing HIV-prevention interventions for this population, researchers should address both venues separately, as reasons why men engage in non-use of condoms appear to differ.