Diversity and uniformity in genetic responsibility: moral attitudes of patients, relatives and lay people in Germany and Israel

The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse

Making cheaper labor: Domestic outsourcing and development in the Galilee

Middle Eastern Studie

Carrier matching and collective socialization in community genetics: Dor Yeshorim and the reinforcement of stigma

Dor Yeshorim, the premarital carrier testing program designed and implemented by the ultra-orthodox Jewish community, has succeeded in generating high uptake thus considerably reducing the number of children born with genetic diseases. Those critical of the program stress its directive and coercive features which are said to compromise personal autonomy, while those in favor emphasize its efficiency, cultural fit, and the reduction of stigma. This debate has so far, however, been addressed only from a top-down view representing the theories of community leaders and bioethicists, while the actual meaning and practice of carrier matching as experienced by community members have remained unexplored. Based on interviews with 24 ultra-orthodox women and 5 matchmakers in Israel, as well as on observations of instructions in the community, this exploratory study shows how Dor Yeshorim has been selectively incorporated into the traditional matchmaking process. We examine the unintended consequences of this selective assimilation, namely how messages that propagate ignorance and fear, as well as misunderstandings regarding the genetic basis of carrier matching, reinforce the continuing stigmatization of presumed carriers. The paper concludes by discussing the findings in the broader context of the social analysis of the ethics of community genetics.Israel Premarital carrier testing Community genetics Stigmatization Bioethics Religion

Coming to terms with the imperfectly normal child: attitudes of Israeli parents of screen-positive infants regarding subsequent prenatal diagnosis

This study examines the interface between newborn screening and prenatal diagnosis from the point-of-view of parents of screen-positive children. Many conditions covered by newborn screening represent classic (autosomal recessive) Mendelian disorders. Parents of screen-positive infants therefore often come to learn that they are carriers of the disease, and face a decision whether to test for it in future pregnancies. Semi-structured interviews were conducted in 2015-2017 with 34 Israeli parents whose child was screen positive. Three major themes emanated from the parents' attitudes toward prenatal testing for the disease in prospective hypothetical pregnancies: rejection of prenatal testing for the disease associated with the screen positive, and relying instead on newborn screening to reveal if a future baby is also sick (18/34, 53%); support of prenatal testing to get more information (7/34, 21%) and support of prenatal testing in order to abort in case of a test positive (9/34, 26%). We discuss the importance of newborn screening for reproductive decision-making, highlighting the arguments associated with positive and negative parental views of the possibility of having another child with the same condition associated with the screen-positive of the child that had already been born. The conclusions challenge the common assertion that parents pursue the dream of the "perfect child" through prenatal diagnosis that "naturally" leads to selective abortion. The diversity of views expressed by Israeli parents of screen-positive children highlights the diversity of normative scripts of "genetic responsibility" in the context of parenthood

Transparency, consent and trust in the use of customers' data by an online genetic testing company:an Exploratory survey among 23andMe users

23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (68%) were aware that 23andMe could store their data and use it for certain purposes without their consent, over 40% were not aware that using and sharing customer data was part of the business model. Views were also divided regarding what type of consent was most appropriate. We explore the implications of these divides for participatory research and for the importance of transparency and trust in commercially-driven scientific knowledge production