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Article
Publication date: 1 January 1999

Robert F. Rizzo

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

Abstract

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.

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International Journal of Social Economics, vol. 26 no. 1/2/3
Type: Research Article
ISSN: 0306-8293

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Article
Publication date: 1 January 1992

David C. Wyld, Sam D. Cappel and Daniel E. Hallock

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.”…

Abstract

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.

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Equal Opportunities International, vol. 11 no. 1
Type: Research Article
ISSN: 0261-0159

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Book part
Publication date: 16 July 2015

Amaya Gilson, Susan R. Hemer, Anna Chur-Hansen and Shona Crabb

Risk notification is part of a focus on preventive medicine that is dominant in contemporary Western biomedicine. Genomics has forecasted great advances in alleviating…

Abstract

Purpose

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.

Methodology/approach

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

Findings

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.

Originality/value

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.

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Genetics, Health and Society
Type: Book
ISBN: 978-1-78350-581-4

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Case study
Publication date: 20 January 2017

Daniel Diermeier and Shobita Parthasarathy

Describes Myriad Genetics and its struggle to develop a genetic testing service while facing challenges from competitors and activist organizations. After Myriad's…

Abstract

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.

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Kellogg School of Management Cases, vol. no.
Type: Case Study
ISSN: 2474-6568
Published by: Kellogg School of Management

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Abstract

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Contemporary HRM Issues in the 21st Century
Type: Book
ISBN: 978-1-78973-457-7

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Article
Publication date: 17 December 2020

Xinyu Wei, Heng Xie, Xianghui Peng and Victor Prybutok

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.

Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Originality/value

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.

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Industrial Management & Data Systems, vol. 121 no. 2
Type: Research Article
ISSN: 0263-5577

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Book part
Publication date: 19 July 2018

Katharina Heyer

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…

Abstract

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.

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Studies in Law, Politics, and Society
Type: Book
ISBN: 978-1-78756-208-0

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Article
Publication date: 21 June 2021

Farahnaz Amini, Kok Wah Yee, Siew Chin Soh, Abdulateef Alhadeethi, Roya Amini and Edmond Siah Chye Ng

Autism spectrum disorder (ASD) is a group of complex neurodevelopmental disorders with uncertain etiology. Evidence shows that genetic testing can explain about 20% of…

Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Originality/value

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.

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Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

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Article
Publication date: 1 April 1986

Elaine Draper

The problem of workers at risk should be reframed to reflect the impact of social stratification, power relations and divergent interests in occupational health practices…

Abstract

The problem of workers at risk should be reframed to reflect the impact of social stratification, power relations and divergent interests in occupational health practices. The past two decades have seen rapid developments in technology for detecting genetic traits and abnormalities in individuals that may indicate damage from chemical exposure. Occupational physicians, industrial managers and biomedical scientists increasingly favour this technology. However these methods have only selective appeal and are quite controversial. Their accuracy in identifying high‐risk workers is disputed as well as their value and consequences. Social factors that shape the way workers at risk have been defined are discussed. These social processes help to explain the way issues of risk are framed and industrial practices are conducted. They also explain patterns of support and opposition to genetic technology.

Details

International Journal of Sociology and Social Policy, vol. 6 no. 4
Type: Research Article
ISSN: 0144-333X

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Book part
Publication date: 24 August 2005

Eri Shinoki and Ichiro Matsuda

The progress of genetic medicine has given rise to recent changes in the field of health care, such as expected benefits and potential risks for patients and their…

Abstract

The progress of genetic medicine has given rise to recent changes in the field of health care, such as expected benefits and potential risks for patients and their relatives. Individual genetic information can unlock many secrets within the genetic family and, sometimes the community to which he or she belongs. Therefore, the traditional duty of confidentiality owed by a health care professional to a patient has been challenged by the more serious discussions based on new genetics. Clinical geneticists providing genetic services must be aware of such complicated situations and whenever possible offer support to the patient (client) and their family members. Excluding eugenics and nonscientific perspectives, the Japanese government renamed and reworked “The Eugenic Protection Act” into the “Maternal Heath Protection Act” in 1996. From 1995 to 2003, the Japanese Society of Human Genetics (JSHG) revised guidelines for genetic testing three times. This process attempted to clarify indications for genetic testing, to focus on protection of individual genetic privacy and to deepen respect for familial relationships and responsibilities. The survey involving 221 JSHG approved clinical geneticist (response rate 54%) revealed that during last 5 years the number trying to do “non-directive” rather than “directive” counseling increased significantly. Although there is still in confusion on certain issues, such as data disclosure to relatives, the global bioethical view of new genetics is gaining Japanese geneticists’ acceptance.

Details

Taking Life and Death Seriously - Bioethics from Japan
Type: Book
ISBN: 978-0-76231-206-1

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