Michigan BioTrust for Health: Public Support for Using Residual Dried Blood Spot Samples for Health Research

Abstract

Purpose: Focus groups were utilized as a mechanism to solicit input from the public in developing the Michigan BioTrust for Health, a program of the Michigan Department of Community Health to improve storage conditions and promote use of residual newborn screening dried blood spots in health research. Methods: In 2008–2009, 10 diverse communities representative of the general public that might have special concerns as stakeholders in the BioTrust were identified, and 4 discussion questions were developed for use with a standard agenda. Focus group discussions were audio-recorded and transcribed by department staff. Qualitative conclusions resulting from the group discussions were compared with written, quantitative pre- and post-survey responses completed by individual participants. Results: Overall, there was considerable concurrence of opinion across the focus groups. Participants were generally positive about the BioTrust; a sentiment that held true across different demographic populations with over 85% of participants stating they would support use of residual dried blood spots in health research. Conclusion: The focus group process and findings played an important role for public health policy makers in affirming the importance of engaging and informing the public and led to concrete steps to foster community support.

Use of Archived Neonatal Bloodspots for Examining Associations between Prenatal Exposure to Potentially Traumatic or Stressful Life Events, Maternal Herpesvirus Infection and Lifetime History of Generalized Anxiety Disorder in Offspring

“…Recent community-based surveys conducted across several cities in Michigan indicate that many individuals are not aware they or their children have archived bloodspot samples stored in the MNB and that there is lack of consensus among Michigan residents about use of these samples in research and ideal consent policies and practices (Duquette et al, 2012;Platt et al, 2014;Thiel et al, 2014). We took several measures to foster knowledge regarding the storage and use of neonatal bloodspots as well as options for consent among participants in our study.…”

From Newborn Screening to Population Health Research: Implementation of the Michigan BioTrust for Health

“…Among BRFS respondents, 72% said they favored such use. 4,5 Considering the responsibilities of public health departments, as established in Michigan law, the legal roundtable determined that MDCH had "qualified ownership" of residual dried blood spots. 6 This ownership allows MDCH to exercise control over the use of dried blood spots for the benefit of the child and the public, while taking into account ethical considerations.…”

“…Our findings, based on the actual proportion of Michigan parents granting consent for use of their child's specimen in the BioTrust, are consistent with previously measured baselines of public support for dried blood spot research in Michigan and nationally using survey data. 4,5,15 Two critical measures of a universal consent process are the potential impact on NBS and the population of blood spots remaining available for research. We have not observed a substantial increase in parental refusal for NBS, despite potential concerns that increased publicity might negatively impact the program.…”

The Public Health Genomics Translation Gap: What We Don’t Have and Why It Matters

“…To further lower barriers, the tool was recently upgraded to be compatible with electronic health records (EHR) with the hope that the tool could be used as part of the patient encounter. Public private partnerships can play an active role in the promotion of evidence-based best preventive practices such as the Aetna Foundation’s study on community-based use of genetic tests for cancer risk [15] and the report by Duquette et al [16] in this issue.…”