Taiwanese adults' attitudes toward the privacy and confidentiality of genetic testing: A national survey

Background: The use of genetic information involves complex ethical, legal, and social implications for individuals, families and the society. Particularly, the potential psycho-social impacts and possible discrimination in insurance and workplace resulting from genetic tests have made privacy and confidentiality more complicated issues and require special ethical considerations. This Taiwan-based study started an initial window to address these important issues. Methods: We developed questionnaire based on a hypothetical case scenario using genetic testing for Alzheimer (a well-developed and commonly-used test in Taiwan) as an example. A total of 925 Taiwanese adults were surveyed to express their opinions on privacy and confidentiality subject related to hypothetical positive results of genetic screening test for Alzheimer. Results: Nearly half of the sample (49.0%) would be willing to disclose the positive genetic testing result to their family members and other relatives. Yet, 63.6% believed that it is patients’ decision to determine if doctors should inform the genetic testing results to their relatives. Only about half of participants believed that future employers have no right to ask employees to disclose genetic information (49.4%) and undergo genetic testing (53.7%). Discussion: While the majority of participants in this study were concerned about privacy and confidentiality related to genetic testing, the percentages were smaller than Western countries. Genetics education for the general public is required in Taiwan. In addition, relevant health policies should be developed and implemented to protect Taiwanese people’s rights against genetic discrimination.