Women's Choices Regarding Use of Their Newborns' Residual Dried Blood Samples in Research
Objective:
To determine the proportion of informed choices women made about donating their newborns' blood samples for research.
Design:
A quantitative analysis of informed choice using data on women's knowledge and attitudes from a descriptive, cross-sectional survey.
Setting:
The state of Michigan.
Participants:
Women (N = 69, ≥18 years old) who had (a) newborns 0 to 3 months of age, (b) yes or no decisions regarding use of the blood sample for research on file, (c) no evidence of an infant death in the state database, (d) completed the knowledge scale, (e) completed the attitude scale, and (f) recalled the decision (i.e., yes or no) about donating blood samples.
Methods:
We used the multidimensional measure of informed choice to calculate the proportion of informed choices in data on women's knowledge, attitudes, and decisions about biospecimen research.
Results:
Fifty-five percent (38/69) of participants made informed choices about donating newborn blood samples for research, and 45% made uninformed choices (31/69). Inadequate knowledge about biospecimen research contributed to 87% of uniformed choices (27/31). Participants who declined to donate their newborns' blood samples struggled with making decisions consistent with their values.
Conclusion:
Nearly half of the participants made uninformed choices about donating the blood samples of their newborns for research. Women need more information about genetics and the storage and research use of newborns' blood samples to make informed choices. Nurses need to be made aware of the ethical, legal, and social implications of such research because they are primary sources of advocacy, information, and support for childbearing women and may be charged with overseeing or obtaining informed consent. Additional research with larger, more diverse samples is needed.
