Maternal attitudes toward DNA collection for gene–environment studies: A qualitative research study

Abstract

To assess attitudes toward DNA collection in an epidemiological study, focus groups were assembled in September 2007 with mothers who had participated in a case-control study of birth defects. Each recruited mother previously had completed an interview and had received a mailed kit containing cytobrushes to collect buccal cells for DNA from herself, her infant, and her infant's father during the period July 2004 through July 2007. A total of 38 mothers attended six focus groups comprising: (1) non-Hispanic Black mothers of case infants who participated or (2) did not participate in DNA collection, (3) mothers of any race or ethnicity who had case infants of low birth weight who participated or (4) did not participate in DNA collection, and (5) non-Hispanic Black mothers of control infants who participated or (6) did not participate in DNA collection. Moderator-led discussions probed maternal attitudes toward providing specimens, factors that influenced decision making, and collection method preferences. Biologics participants reported that they provided DNA for altruistic reasons. Biologics nonparticipants voiced concerns about government involvement and how their DNA will be used. Information provided (or not provided) on DNA use, storage, and disposal influenced decision making. Biologics participants and nonparticipants reported that paternal skepticism was a barrier to participation. All mothers were asked to rank DNA collection methods in terms of preference (cytobrushes, saliva, mouthwash, newborn blood spots, and blood collection). Preferred methods were convenient and noninvasive. Better understanding attitudes toward DNA collection and preferred collection methods might allow more inclusive participation and benefit future studies.

Factors affecting maternal participation in the genetic component of the National Birth Defects Prevention Study—United States, 1997–2007

“…A recent study assessed attitudes regarding DNA collection in the NBDPS through focus groups of mothers who had participated in the buccal cell component of the study and those who had not. 12 The primary reasons focus group respondents would choose not to participate in buccal cell collection included distrust of the government, concerns or skepticism regarding how DNA specimens and genetic information would be used, and paternal skeptism about sharing specimens and genetic information. 12 The primary reasons focus group respondents would choose to participate in buccal cell collection included wanting to help prevent or find cures for birth defects, to help advance science in general, or both.…”

“…However, the inclusion of a genetic component might affect study participation and thereby causing selection bias due to concern about the risks of collecting genetic information. 5,10–12 Differences between those who participate and those who do not participate can be used to predict characteristics that influence participation and can be used to develop strategies to increase participation rates in a genetic component of a study. Furthermore, the potential biases that arise as a result of low participation rates can also be better evaluated.…”

Challenges in Studying Modifiable Risk Factors for Birth Defects

“…Convenient non-invasive collection methods are preferred, especially in pediatric populations [76, 77]. Distrust of genetic research, especially among minorities, hampers sample collection and could create selection bias [76, 78-80]. Rapid advances in technology and implementation of data sharing policies were not anticipated in the initial consent of many studies and raise the risk of identifying study participants from coded genetic data.…”

Paediatric Biobanks: Opinions, Feelings and Attitudes of Parents towards the Specimen Donation of Their Sick Children to a Hypothetical Biobank

“…While speculative studies have focused on ethical issues of paediatric biobanks such as proxy consent, minor assent, privacy protection and return of results [9,10,11], empirical research has concentrated on interviews of health professionals [12,13], parents [14,15,16] and the general public [17] regarding the involvement of children in biobank-based projects. Many of these studies have explored the parental opinions and attitudes towards the enrolment of healthy children in a hypothetical or existing biobank [18,19,20,21]. To date, few studies have analysed the views, perceptions or attitudes of parents about the participation of sick children in biobanks [14,22,23].…”