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Motivations of women with sickle cell disease for asking their partners to undergo genetic testing

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  • Ross, Paula Thompson

Abstract

Women with sickle cell disease (SCD) now survive well into adulthood, thus knowledge about their reproductive decision-making is becoming increasingly important to both social and medical audiences. Through in-depth interviews with 28 adult women with SCD, I explored their motivations for asking their partners to undergo prospective genetic testing. The analysis revealed several sources of motivation including participants' concerns about the potential physical suffering of future children; potential feelings of guilt and stigma; determining whether to enter or remain in an intimate relationship; and finally, their mother's lack of insisting on their father's undergo testing. These findings offer insight into the pre-conception reproductive decision-making behavior of women with SCD.

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  • Ross, Paula Thompson, 2015. "Motivations of women with sickle cell disease for asking their partners to undergo genetic testing," Social Science & Medicine, Elsevier, vol. 139(C), pages 36-43.
    • Handle: RePEc:eee:socmed:v:139:y:2015:i:c:p:36-43
    DOI: 10.1016/j.socscimed.2015.06.029
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    References listed on IDEAS

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    1. Atkin, Karl & Ahmad, Waqar I. U. & Anionwu, Elizabeth N., 1998. "Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals," Social Science & Medicine, Elsevier, vol. 47(11), pages 1639-1651, December.
    2. Arribas-Ayllon, Michael & Sarangi, Srikant & Clarke, Angus, 2008. "Managing self-responsibility through other-oriented blame: Family accounts of genetic testing," Social Science & Medicine, Elsevier, vol. 66(7), pages 1521-1532, April.
    3. Kavanagh, Anne M. & Broom, Dorothy H., 1998. "Embodied risk: My body, myself?," Social Science & Medicine, Elsevier, vol. 46(3), pages 437-444, February.
    4. Bayer, Ronald, 2008. "Stigma and the ethics of public health: Not can we but should we," Social Science & Medicine, Elsevier, vol. 67(3), pages 463-472, August.
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    1. Berghs, M. & Dyson, S.M. & Gabba, A. & Nyandemo, S.E. & Roberts, G. & Deen, G., 2020. "“You have to find a caring man, like your father!” gendering sickle cell and refashioning women's moral boundaries in Sierra Leone," Social Science & Medicine, Elsevier, vol. 259(C).

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