Women's experience of maternal serum screening.

OBJECTIVE To explore the ideas, opinions, feelings, and experiences of women regarding prenatal genetic screening, specifically maternal serum screening (MSS).

DESIGN Qualitative technique of focus groups.

SETTING Northern, rural, inner-city, urban, and suburban communities in Ontario.

PARTICIPANTS Women who had given birth to babies from January 1994 to May 1996, but who were not currently pregnant (n = 60).

METHOD Six focus groups composed of women living in various communities who had recently given birth to babies explored the experience of MSS.

MAIN FINDINGS Women want informed choice about prenatal genetic screening. Three factors influenced women's decisions to undergo or decline prenatal genetic screening: their personal values, including their philosophy of life, moral, and religious values, and attitudes regarding Down syndrome and disability; social support including their partners, families, and friends; and quality of information from health care providers. Women want their providers to give them information personally; they want to receive the information as early as possible in prenatal care to allow time for reflection; and they want unbiased, accurate information in order to make a decision that is in keeping with their personal values and beliefs.

CONCLUSIONS Knowledge of women's ideas, opinions, feelings, and experiences regarding MSS suggests specific ways health care providers can facilitate informed decision making in prenatal screening. Providing information about genetic testing needs to be individualized, with women actively participating in the decision-making process. Information needs described by these women could apply to other prenatal genetic tests that might be available in the future.