Dr Philippa Brice writes:
Genomic databases are the bedrock of new moves towards more tailored and precise personalised medicine, and nowhere more so than in cancer. Tumour genome sequences can both inform diagnosis, prognosis and treatment for cancer, and serve as a crucial research resource to underpin the development of new and improved options for the same clinical elements.
[…]
Mean while, the International Cancer Genome Consortium (ICGC) has responded to renewed concerns about data privacy and the potential for re-identification of supposedly anonymous individuals with a review of their data sharing and confidentiality policies. Writing in Nature Biotechnology, they conclude that given the level of expertise in genetics and biostatistics needed for re-identification ‘do not create more than remote concerns’ for participants. Overall, they propose that ‘promises of absolute privacy and data protection are unrealistic’ in the age of genomic and other big data, but that rather researchers and policy-makers have obligations in terms of ‘vigilance, transparency and honesty’ to achieve a balance between protecting privacy and data accessibility.
Read more on PHG Foundation.
Elsewhere this morning, I see:
Properly applied de-identification is an effective tool to protect privacy, but recent criticisms have suggested the opposite. The perpetuation of this myth has the potential to adversely impact health research, innovation and Big Data insights.
In order to address the misconceptions surrounding de-identification, Ontario’s Information and Privacy Commissioner Dr. Ann Cavoukian , and Information Technology and Innovation Foundation (ITIF) Senior Analyst Daniel Castro , have jointly released a new white paper, “Big Data and Innovation – Setting the Record Straight: De-Identification Does Work.”
Read more of the press release on CNW.
If you’re interested in de-identification/re-identification concerns, you should follow Dr. Daniel Barth-Jones on Twitter for other links and commentary.