The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

Abstract

Next-generation sequencing and global data sharing challenge many of the governance mechanisms currently in place to protect the privacy of research participants. These challenges will make it more difficult to guarantee anonymity for participants, provide information to satisfy the requirements of informed consent, and ensure complete withdrawal from research when requested. To move forward, we need to improve the current governance systems for research so that they are responsive to individual privacy concerns but can also be effective at a global level. We need to develop a system of e-governance that can complement existing governance systems but that places greater reliance on the use of technology to ensure compliance with ethical and legal requirements. These new governance structures must be able to address the concerns of research participants while at the same time ensuring effective data sharing that promotes public trust in genomics research.

All your data (effectively) belong to us: data practices among direct-to-consumer genetic testing firms

“…Several novel means of obtaining consent for research and outlining potential harms have been outlined in the literature and should be explored by DTC-GT companies. 11,31,33 This study had several limitations. First, we only examined information publicly available online in a specific period of time.…”

“…The impossibility of ensuring absolute confidentiality of uniquely identifiable human genetic information makes it essential that consumers be given a full understanding of what they are agreeing to before purchasing genetic testing services. 11 Companies should be given credit for the consistent provision of information regarding security protocols, storage procedures, and third-party disclosures. However, there are significant weaknesses that must be addressed.…”

“…Use of data for research, even when relying on de-identification, is also a concern because advancements in genomic technology have made complete withdrawal from research almost impossible and have given genetic samples an inherent risk of re-identification. 11,31,32 This is not to say that secondary use of data for research is inappropriate, but rather that explicit consent that takes into account these realities is essential. Several novel means of obtaining consent for research and outlining potential harms have been outlined in the literature and should be explored by DTC-GT companies.…”

“…1 With the increase in next-generation whole-genome sequencing technology, risks related to re-identification, sharing of data without consent, and the inability to withdraw from research are more pressing than ever. 11 The limited prior research regarding transparency practices among DTC-GT companies suggests a clear weakness in current corporate policies. A recent study of 86 unidentified DTC-GT company websites targeting Canadian consumers found that 67% provided information insufficient for consumers to determine how their data and sample would be treated.…”

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

“…This question is relevant because there is an inherent trade-off between competing values in managing access to data for research: most obviously between protecting privacy and generating public health benefits from data-driven research. 32 Research that simply asks participants what they want or prefer may generate an idealised but impractical model that does not sufficiently account for these trade-offs. Few prior studies explicitly explore which data sharing practices people are willing to accept, all things considered, as opposed to what they prefer.…”