Introduction
In the ever-evolving landscape of data sharing and consent, understanding the perspectives of individuals is crucial, especially for practitioners in fields like speech-language pathology. A recent systematic literature review titled "A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States" sheds light on the attitudes towards broad consent and data sharing. This blog aims to help practitioners leverage these insights to improve their skills and encourage further research.
Understanding Broad Consent
Broad consent involves participants agreeing to have their samples, genomic data, and health information retained for future research deemed appropriate by biobanks. This approach contrasts with more specific consent models, such as tiered or study-specific consent. The review found that while broad consent was often preferred when it was the only option, many participants expressed concerns, particularly regarding privacy and the involvement of commercial entities.
Key Findings from the Review
- Broad consent was generally preferred over tiered or study-specific consent, especially when samples were de-identified and privacy was addressed.
- Willingness to share data was high, but lower among under-represented minorities and those with privacy concerns.
- Participants were more willing to share data with academic institutions than with government or commercial entities.
Implications for Practitioners
For practitioners in speech-language pathology and related fields, these findings highlight the importance of addressing privacy concerns and ensuring transparent communication about data use. Practitioners should consider the following actions:
- Enhance Communication: Clearly communicate the purpose of data collection and how it will be used, ensuring participants understand the benefits and risks.
- Prioritize Privacy: Implement robust data protection measures and reassure participants about the confidentiality of their information.
- Engage with Diverse Communities: Actively involve under-represented groups in discussions about data sharing to address specific concerns and increase trust.
Encouraging Further Research
The review concludes that additional research is needed to understand factors affecting willingness to give broad consent. Practitioners can contribute by conducting studies that explore the attitudes of their specific populations, such as children receiving speech-language therapy, and by sharing findings with the broader research community.
Conclusion
Understanding the nuances of broad consent and data sharing is vital for practitioners aiming to create positive outcomes for children. By implementing the insights from this review, practitioners can enhance their practice and contribute to a more informed and inclusive approach to data sharing.
To read the original research paper, please follow this link: A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.
