
Background: Genetic information entails information about future risk of disease or information about carrier status. The Human Medical use of Biotechnology Act (2003) § 5-8 prohibits the use of this form of genetic information outside the health care system, and protects people against discrimination and stigmatization. This means that insurance companies or employers are not entitled to use genetic information in applications for health insurance or in terms of employment. Purpose: The purpose of this study was to gain new insight and a broader knowledge regarding the Human Medical use of Biotechnology Act § 5-8 and its injunction against the use of genetic information outside the health care system. The focus of the study was how involved parties experience the Act’s ban towards using genetic information outside the healthcare system. Material and methods: Qualitative method was used through in-depth interviews of seven participants from various involved parties of the Human Medical use of Biotechnology Act § 5-8. Results: The study shows that the general feedback from the participants is that they experience the paragraph 5-8 to be important. This is because genetic information is private and can easily be linked to a person’s identity. They also experience that genetic information can easily be misused, misinterpreted and can lead to healthy people being proclaimed sick due to genetic testing. Despite the challenges associated with enforcing the paragraph, the participants believe that it has a major role to protect people from discrimination and stigmatization. In future perspectives they also think the paragraph will be important in terms of new technology and commercial forces. Conclusion: The paragraph 5-8 has an important significance for the participants. To prevent people from discrimination and stigmatization, it will also be important in future perspectives to prohibit the use of genetic information outside the health care system. Suggestions for further research would be to investigate how people with genetic risk for disease experience the prohibition of genetic information outside the health care service.
330, Genetikk, 610, Genetisk informasjon, Genetisk veiledning, Genetic Counseling, Diskriminering, 761901, Databases, Genetic, Stigmatisering, Databases, Genetic, Arbeidsliv, Genetic Privacy
330, Genetikk, 610, Genetisk informasjon, Genetisk veiledning, Genetic Counseling, Diskriminering, 761901, Databases, Genetic, Stigmatisering, Databases, Genetic, Arbeidsliv, Genetic Privacy
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