Elaine Warburton of Genetics & Health writes:
Continuing G&H’s exclusive interview with Navigenics’ Medical Director Dr Michael Nierenberg, we explore the whole issue of privacy, insurance, GINA and ethics…..
One of the main consumer concerns is that of privacy of information, both in terms that a genetic test has been undertaken but also that the results of the test are kept private and out of the public domain. At the time of writing, the controversial GINA (Genetic Information Non-discrimination Act) is being passed by the US Senate which will enable genetic testing information to be kept private and not be used to discriminate against an individual, particularly by the insurance industry. The insurance industry is understandable against the Bill.
Dr Nierenberg. Navigenics’ Medical Director, advises that Navigenics takes the whole issue of security of data very seriously.
“Navigenics takes precautions such as multiple servers, encryption and security audits … each member has access to their own section of the website which is password protected. However, if a member forgets their password, there is a highly complicated route to get back in. It is not just a case of emailing the password to an email address. … GINA legislation will be helpful in terms of protecting sensitive informationâ€.
The company has also incorporated a rigorous Ethics Advisory Board tasked to develop policies and report to the Executive Board in the fields of bioethics, patient rights, health information technology and technology and data security.
Read more of the interview on Genetics & Health
I am member of Life Insurance Canada team and this topic is discussed also here. Today, there are medical tests, enabling clients to achieve some bonus in price of life insurance policy. Maybe the genetic tests could be treated similarly – not to create obstacle, but to give advantage. But – do you really think governemnt will be able to secure those information? Do you think that chain doctors-nurses-laborants-IT experts- … will be so tight??
Honestly? I’ve been in health care for over 25 years. I’ve also been covering privacy news and breaches for over 7 years. At this point, I am not optimistic about security or privacy. In fact, I advise my patients that if they can afford it, don’t submit to insurance because I worry about the files that are being created that might come back to haunt them — or that could get lost, stolen, or exposed.
Ask yourself: if your child had a serious mental health issue, would you want to see that record exposed on the internet?
Then think about the two health insurance company breaches revealed this past week. Both totally and readily easily avoidable, and yet they happened.