Genetic counseling following direct-to consumer genetic testing: Consumer perspectives.

As the use and scope of direct-to-consumer genetic testing (DTC GT), also becoming known as consumer-driven genetic testing, increases, consumers may seek genetic counseling to understand their results and determine healthcare implications. In this study, we interviewed individuals who sought genetic counseling after receiving DTC GT results to explore their motivations, expectations, and experiences. Participants were recruited from the Impact of Personal Genomics (PGen) Study, a longitudinal cohort study of DTC GT customers. We interviewed 15 participants (9 females, mean age = 38 years) by telephone and analyzed the double-coded transcripts using qualitative methods. Motivations for genetic counseling included family and personal health histories, concern and confusion about results, and information-seeking; of note, one-third of our interview participants had Ehlers-Danlos syndrome Type III (hypermobility type). Expectations of genetic counseling sessions were high. Participants generally saw DTC GT results as valid and potentially impactful for their healthcare, wanted more thorough explanations in "layman's terms," a pooling of their results with their family and personal health history and a "game plan." Several participants had already accessed online resources, including resources typically used by genetics clinicians. Our results point to several elements of a successful DTC GT genetic counseling session: 1) effective contracting when starting the clinic visit, especially determining motivations for genetic counseling, results that are concerning/confusing and resources already accessed; 2) ascertainment and management of expectations and clearly communicating if and why all results may not be reviewed; 3) explaining how DTC GT differs from clinical genetic testing and why additional testing may not be indicated and 4) listening to (not dismissing) patient concerns about their results. For those patients who seek genetic counseling about DTC GT results, the findings from our study can help inform case preparation and provision of genetic counseling.

How acceptable is paternalism? A survey-based study of clinician and nonclinician opinions on paternalistic decision making.

We conducted an empirical study to explore clinician and lay opinions on the acceptability of physician paternalism. Respondents read a vignette describing a patient with brain hemorrhage facing urgent surgery that would be lifesaving but would result in long-term severe disability. Cases were randomized to show either low or high surrogate distress and certain or uncertain prognosis, with respondents rating the acceptability of not offering brain surgery. Clinicians (N = 169) were more likely than nonclinicians (N = 649) to find the doctor withholding surgery acceptable (30.2% vs. 11.4%, p ≤ 0.001). Among clinicians, the doctor withholding surgery was more acceptable when prognosis was certain to be poor (odds ratio [OR] 2.04, 95% confidence interval [CI] 1.04, 4.01). There was no effect of surrogate distress on clinician ratings. Responses among lay public were more variable. Given the differences in attitudes across clinicians and lay public, there is an ongoing need to engage stakeholders in the process of end-of-life decision making.

Oncologists' End of Life Treatment Decisions.

BACKGROUND: Optimal treatment decisions for older end-stage cancer patients are complicated, and are influenced by oncologists' attitudes and beliefs about older patients. Nevertheless, few studies have explored oncologists' perspectives on how patient age affects their treatment decisions. METHODS: In-depth interviews were conducted with 17 oncologists to examine factors that influence their chemotherapy decisions for adults with incurable cancer near death. Transcripts of recorded interviews were coded and content analyzed. RESULTS: Oncologists identified patient age as a key factor in their chemotherapy decisions. They believed older adults were less likely to want or tolerate treatment, and felt highly motivated to treat younger patients. DISCUSSION: Qualitative analysis of in-depth interviews resulted in a nuanced understanding of how patient age influences oncologists' chemotherapy decisions. Such understanding may inform practice efforts aimed at enhancing cancer care at the end of life for older patients.

"It's up to the woman's people": how social factors influence facility-based delivery in Rural Northern Ghana.

To explore the impact of social factors on place of delivery in northern Ghana. We conducted 72 in-depth interviews and 18 focus group discussions in the Upper East Region of northern Ghana among women with newborns, grandmothers, household heads, compound heads, community leaders, traditional birth attendants, traditional healers, and formally trained healthcare providers. We audiotaped, transcribed, and analyzed interactions using NVivo 9.0. Social norms appear to be shifting in favor of facility delivery, and several respondents indicated that facility delivery confers prestige. Community members disagreed about whether women needed permission from their husbands, mother-in-laws, or compound heads to deliver in a facility, but all agreed that women rely upon their social networks for the economic and logistical support to get to a facility. Socioeconomic status also plays an important role alone and as a mediator of other social factors. Several "meta themes" permeate the data: (1) This region of Ghana is undergoing a pronounced transition from traditional to contemporary birth-related practices; (2) Power hierarchies within the community are extremely important factors in women's delivery experiences ("someone must give the order"); and (3) This community shares a widespread sense of responsibility for healthy birth outcomes for both mothers and their babies. Social factors influence women's delivery experiences in rural northern Ghana, and future research and programmatic efforts need to include community members such as husbands, mother-in-laws, compound heads, soothsayers, and traditional healers if they are to be maximally effective in improving women's birth outcomes.

Extending the Mertonian Norms: Scientists' Subscription to Norms of Research.

This analysis, based on focus groups and a national survey, assesses scientists' subscription to the Mertonian norms of science and associated counternorms. It also supports extension of these norms to governance (as opposed to administration), as a norm of decision-making, and quality (as opposed to quantity), as a evaluative norm.

The warp of evidence-based medicine: lessons from Dutch maternity care.

Most critiques of evidence-based medicine (EBM) focus on the scientific shortcomings of the technique. Social scientists are more likely to criticize EBM for its ideological biases, a criticism that makes sociological sense but is difficult to substantiate. Using evidence from the scientific debate over maternity care in the Netherlands--where nearly one-third of births take place at home--the author shows that research evidence is the product of a researcher's assumptions about the practice in question. In the case of maternity care in the Netherlands, ideological differences about the most appropriate way to give birth--based in the researcher's clinical experience--give rise to irresolvable disagreements about what constitutes evidence and how that evidence is to be interpreted. "Evidence" cannot settle scientific disputes in any simple way. Rather, it becomes a rhetorical justification for whatever particular groups were going to do anyway. Scientific evidence rests on clinical practice, which in turn is rooted in structural arrangements and cultural ideas.

Comparative studies in maternity care.

This fourth paper in a series on research emphasises the importance of conducting comparative research across cultures and countries. It highlights the advantages of such research and outlines some methodological issues inherent within it.