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Substantial progress has been made in identifying genes that raise risk for epilepsy, and genetic testing for some of these genes is increasingly being used in clinical practice. However, almost no empirical data are available from the perspective of people with epilepsy and their family members about the impact of genetic information and potential benefits and harms of genetic testing. To address this gap we conducted in-depth qualitative interviews with 40 individuals (22 with epilepsy, 18 unaffected) in the USA from families containing multiple affected individuals who had participated in epilepsy genetics research. The interviews were coded and analyzed using the principles of grounded theory. Several major themes emerged from these interviews. Participants expressed “personal theories of inheritance” that emphasized commonalities among relatives and the idea that disease risk is most shared by family members who share physical or personality traits. Most participants said they would have genetic testing if it were offered. They cited many potential benefits, including learning what caused epilepsy in their family, being better able to care and advocate for children at risk, reducing guilt and blame, providing an increased sense of control, and relieving anxiety in unaffected individuals who test negative. The influence of genetic information on reproduction was a particularly salient theme. Although respondents believed genetic testing would be useful for informing their reproductive choices, they also expressed fear that it could lead to external pressures to modify these choices. Other concerns about the potential negative impact of genetic information included increased blame and guilt, increased stigma and discrimination in employment and insurance, self-imposed limitations on life goals, and alterations in fundamental conceptions of “what epilepsy is.” Consideration of the perspectives of people with epilepsy and their family members is critical to understanding the implications of contemporary epilepsy genetic research and testing.

Scholars have recently begun to discuss joint interviewing from a methodological perspective, generally presenting a favorable view of this mode of interviewing. In the present article, the author draws on her experiences with interviewing obstructive sleep apnea patients and their partners to shed further light on the methodological and ethical challenges of joint interviews. Specifically, it is shown that joint interviews may become a site in which one partner silences the other and enacts symbolic violence, with the interviewer as unwilling abettor, or alternatively may facilitate passivity. Joint interviewing may therefore prevent researchers from giving an equal voice to both partners, resulting in partial and fragmented data. In addition, the joint approach may generate tension between members of the couple and harm the quality of relationships, thus contravening the researcher's commitment to non-maleficence. The author points to a few possible solutions and suggests interviewing social partners as an alternative to couples.

Whereas social scientific studies have investigated the emergence of the category Obstructive Sleep Apnoea (OSA), the most commonly diagnosed sleep disorder, no study has examined whether and how the ways in which OSA emerged affect patients' reception of the diagnosis. This article fills this gap by drawing upon in-depth interviews with 65 Israelis who received a laboratory diagnosis of OSA. This study finds that many patients doubt the accuracy of their diagnosis, and argues that this scepticism derives from contested macro-level medicalisation processes that preceed and surround the development of OSA as a diagnostic category. Specifically, past and present controversies over the definitions of OSA and its precursor the 'Pickwickian syndrome' created images of 'OSA patients' as sleepy and obese. Consequently, patients whose self-perception conflicted with this image questioned their diagnosis. Other patients argued that one night of sleep at a laboratory could not reflect their quality of sleep at home, thereby implicitly criticising the ways in which OSA was medicalised. This study enhances our understanding of the underexplored dynamics between the macro and micro levels of medicalisation.

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