Gen-Ethics: Attitudes towards genetic testing among Norwegian breast cancer screening users.
The Gen-Ethics project aims to explore experiences with and attitudes towards genetic testing from a population that has yet to contribute to this field. Our research participants are women who use mammography screening at BreastScreen Norway (BSN). BSN is a public health screening program that invites Norwegian women from 50 to 69 years to a mammography examination every second year.
Women invited to this screening are considered to have an average risk for breast cancer for this age group. We interviewed 21 women aged 52-70 who have used breast cancer screening, and the qualitative data we acquired was analysed inspired by phenomenological methods described by Kvale and Brinkmann. These women's experiences with health decisions regarding public screening programs and other health-related issues can hold valuable information about how they view screening and their attitudes towards genetic testing. This research reveals a new dimension of attitudes towards genetic testing in a Norwegian context.First, we are interested in these women's reasons and reasoning for taking part in mammography screening. We explore how they were informed about the screening program and if the information supplied by BSN influenced their decision to participate. Usage of screening is based on informed consent and voluntary participation. The second part of this study comprises attitudes these women have towards genetic testing. Norwegian research on this topic usually involves patients or at-risk populations for hereditary diseases or cancers. In contrast, we explore mammography users' attitudes and reveal their values and ethical standards towards such testing. Thirdly, we explore the participants' attitudes towards new technologies, such as machines replacing humans, and these women's opinions about ownership and storage of their health data.
Ph.D.-student: Rigmor Katrine Johansen
Ph.D.-project with collaborating partners: Lars Ailo Bongo (project idea), Health Data Lab, Geir Fagerjord Lorem, Hilde Laholt og Louise Keogh.
Project period: 2019-2024
Funded by the Department of Health and Care Sciences, UiT.