This blog is totally independent, unpaid and has only three major objectives.
The first is to inform readers of news and happenings in the e-Health domain, both here in Australia and world-wide.
The second is to provide commentary on e-Health in Australia and to foster improvement where I can.
The third is to encourage discussion of the matters raised in the blog so hopefully readers can get a balanced view of what is really happening and what successes are being achieved.
Quote Of The Year
Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"
Friday, December 15, 2017
An Interesting Article Regarding The Use And Storage Of Genetic Information.
Caitlin Curtis Honorary Research Fellow, The University of Queensland
James Hereward PostDoc Ecological and Evolutionary Genetics, The University of Queensland
We are approaching a time when you might be too scared to have your genome sequenced.
Only last week, a US senator called for an investigation into the privacy policies of direct-to-consumer DNA companies. But this is only one piece of a puzzle that is about to get much more connected.
As with any kind of personal data there are a number of concerns regarding collection, transmission, storage and use. But unlike most other data, your genome reveals intimate information about not only you, but also the people to whom you are related.
It’s time to talk about who can access that data, how, when and why.
Historically there has been a natural separation between these databases, because they tend to contain different types of genetic data. Medical genetic databases, for example, have typically screened specific genes, and this data is usually not variable enough to be useful in law enforcement.
It’s impossible to put a precise figure on the number of genomes that have been sequenced to date. Projects like BabySeq in the US point to a future in which genome sequencing may be a routine screen at birth.
Genome data is not anonymous
Keeping databases separate and anonymous may seem like a solution but this will be very difficult to accomplish. It is already possible, at least in some instances, to use information from a complete genome to locate the donor through searches of publicly available ancestry databases.
The establishment of mandatory DNA testing seems far-fetched, however that may not be the case everywhere. In 2015, Kuwait passed a law mandating DNA collections from all citizens and residents, although this was revoked earlier this year.
Our digital genomes provide information about our predisposition to various medical conditions and this is attractive to insurance companies. The predictive power of the genome is only going to increase over time. Once a consumer has taken a genetic test, they may be required to disclose that fact to an insurer or risk fraud charges.
Australia just created its first National Health Genomics Policy Framework, for 2018-20, and this begins to create guidelines for genomic data. This policy is geared towards medical research, however, so would not apply to consumer DNA services, and does not make provisions for law enforcement access requests.
This article is clearly the beginning, rather than the end, of a discussion on these issues. It seems to me one should be pretty careful just who gets access to your information until much better regulations and protection are in place!