Search results

Examines the impact of genetic testing and therapy on health care in light of the development of the system in the USA since the turn of the twentieth century. Genetic testing and therapy have the potential to create a great advance in health care but also to become a business of multi‐billion dollar proportions. If present trends of investment and long‐range plans mature, health care will be adversely affected in terms of its distribution, access and economy. Developed and sold as commodities in a free‐market economy, genetic advances will economically stress health care and fail to meet the ethical and legal standards demanded by voluntary informed consent and counseling. Without abandonment of the marketplace approach to health care and thorough reform, many will find themselves excluded from the benefits and vulnerable to discrimination.

This study examines perceived transparency of direct-to-consumer (DTC) genetic testing communication and measures its impact on consumers' trust, attitudes, and the intention to recommend the test to others.

An online survey of US–based adults (over 18 years of age) (N = 271) was administered by the online panel company Qualtrics Panels. The sample consisted of participants who have taken a DTC genetic test previously because only existing consumers could provide insight into companies' transparency about the entire genetic testing process (including the communication before, during, and after) as they experienced it. Participants were asked questions that measured intention to recommend DTC genetic tests to others, trust, attitude toward the DTC testing, and perceptions of transparency of the DTC companies' communication.

Results indicated that consumers who perceive DTC genetic testing companies to be transparent in their communication tend to trust the genetic testing process more, have more positive attitudes toward DTC genetic tests, and are more likely to recommend the tests to others.

This study integrates corporate communication and science communication through the theoretical framework of transparency. It empirically demonstrates that message transparency is key to increasing the publics' trust, attitude and behavioral intentions toward companies that involve sensitive health information or online privacy.

This paper answers previous calls to explore the organizational approach of science communication in the context of the under-examined companies in the science and health sectors, specifically the DTC genetic testing industry.

In their book Megatrends 2000, John Naisbitt and Patricia Aburdene (1990) stated that one of the ten “megatrends for the 1990's would be the rise of “The Age of Biology.” One of the central forces behind this societal shift which is occurring right now, they say, is research into understanding human genetics and the rise of biotechnology. The scientific knowledge regarding human genetics and the technology to examine an individual's genetic makeup have grown at a rapid pace, especially in the last decade as a result of the Human Genome Project. This venture has been labelled alternatively as “mediocre science” (Roberts, 1990b: p. 804) and as “biology's Holy Grail,” (Nelkin and Tancredi, 1989: p. 14). It is indisputably a monumental scientific undertaking, likened to the drive to put a man on the moon in the sixties (“The Geography of Genes,” 1989). This knowledge and the resultant trends will likely prove to be important factors not only in our future economy, but also in the nature of how we understand ourselves.

Describes Myriad Genetics and its struggle to develop a genetic testing service while facing challenges from competitors and activist organizations. After Myriad's discovery of the BRCA gene, capable of genetic testing for breast cancer in women, Myriad needed to choose a strategy to provide this service to the public. With several major competitors offering similar services, intense media scrutiny, and a charged activist and political climate, a poor Myriad decision could have major repercussions.

Risk notification is part of a focus on preventive medicine that is dominant in contemporary Western biomedicine. Genomics has forecasted great advances in alleviating disease and prolonging human life, moving from a reactive to a preventative practice. However, in doing so, genomics redraws boundaries, potentially classifying all people as possible carriers of malfunctioning genes. This chapter presents a critical review of the practice of ‘risk notification’ as undertaken by familial cancer genetic testing services, focusing on the right to be informed or not to be informed and implications of knowing.

With backgrounds in anthropology, psychology and public health, the authors draw upon literature around risk notification from a range of disciplines.

In the context of familial cancer, clients may be asked to provide contact information for biological family members to inform them of their potential genetic risk. Through these processes a number of tensions and issues may emerge that relate to fundamental bioethical principles. The ability and decision whether to know, or conversely, to not know, is ethically fraught. We consider the roles and rights of family members and clients, as well as the broader goal of population health.

While much attention has been devoted to clients’ right to know in the context of medical research and treatment, relatively little work has examined the right not to know and adverse consequences of knowing. This review addresses concerns which have rarely been critically examined and debated in the context of risk notification of biological family members.

This paper examines the implications of the disability rights critique of prenatal testing on the development of genetic policy and abortion rights. It traces the reappearance of the disabled body in public deliberations over reproductive and genetic politics that use disability to frame arguments about which bodies are worthy of protection, how and why we limit reproductive choices, and what reasons women may use to terminate their pregnancies. The disability critique of prenatal testing and selective abortion finds itself in productive tension with reproductive rights politics, which increasingly features disability in both pro-life and pro-choice messages. The uneasy alliance between disability and pro-life interests has profound implications for both disability legal scholarship and the sociolegal inquiry into the role of rights articulation – and rejection – by social movements.

The purpose of this research is to investigate how the consumer’s trusting mechanism influences their behavioral adoption intention in the context of genetic testing.

Based on the technology acceptance theory and trust formation theory, the research posits and develops a comprehensive trust model by integrating trust-related factors that correlate to the consumer’s trusting beliefs and trusting intention. Survey data with 525 respondents allow to test and validate the model.

The tested model shows that technology institutional trust base, end-user’s cognitive trust base and social influence are significant determinants of trusting beliefs. The findings also reveal that mediation effects of performance expectancy and perceived risks exist in the relationship between trusting beliefs and trusting intention.

The foreseeable positive impact and rapid market growth of emerging healthcare technologies necessitate the strong need to study user acceptance. However, there is a lack of research on how consumers trust and their adoption intention of such innovations. Prior empirical evidence from different contexts and perspectives also show contradictory findings. This research extends the existing technology acceptance literature to a healthcare context, provides an improved generalized understanding of the consumer’s trusting mechanism in emerging biotechnology and discusses practical insights for regulatory authorities, healthcare institutes and medical professionals.

The purpose of this paper is to inform or alert readers to the extensive use and ready availability of genetic information that poses varying degrees of social and legal danger. The eugenics movement of the 1920s and the general acceptance of genetic essentialism provide context for considering contemporary examples of the problem.

This paper takes an argumentative approach, supporting proposals with ideas from historical and current research literature.

The limits of data protection, extensive use of direct-to-consumer genetic testing and use of genetic information in white nationalist circles portend a resurgence of eugenic beliefs from a century ago.

Research-based recommendations may help to avoid extreme consequences by encouraging people to make informed decisions about the use of genetic information.

The paper counterposes contemporary understanding of genetic testing and data accessibility with the much older ideology of eugenics, leading to concerns about how white nationalists might further their aims with 21st century technology.

Autism spectrum disorder (ASD) is a group of complex neurodevelopmental disorders with uncertain etiology. Evidence shows that genetic testing can explain about 20% of cases. This study aims to assess the level of awareness and perception of medical genetic services among Malaysian parents with ASD children.

A cross-sectional survey using an interviewer-administered questionnaire was done among 111 parents of children with ASD from August 2017 to September 2019 in two clinics in Malaysia.

A majority of children with ASD (80.20%) were male and diagnosed at the age of 3–4 years old (47.80%). When the autistic child was born, most mothers and fathers were aged 26–30 (40.50%) and 31–35 years old (42.30%), respectively. Another child with ASD in nuclear and extended families was reported for 11.70% and 13.50%, respectively. Only 24.30% have seen a professional genetic consultant, and 19.8% have done genetic testing for affected children. The mean score of awareness of genetic services for ASD was 2.48 ± 3.30. Having medical insurance and another child with ASD in the nuclear family was significantly associated with a higher level of awareness (p = 0.01 and p < 0.001, respectively). Most of the participants have a positive perception of these services.

Regardless of demographic factors, participants have poor awareness of genetic services for ASD, likely because the primary physician did not recommend it upon diagnosis. Increasing health-care providers’ knowledge about the current potential of genetic testing for ASD and educational campaigns for the public are critical components of using available genetic tests to improve ASD management.