Navigenics #6 – “Privacy, Insurance, GINA and Ethics”
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 information”.
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.
In terms of working with the health insurance industry, Dr Nierenberg advises that at present the service Navigenics offers is ‘direct to consumer’ and the health insurance industry are not be involved. However the company is already working with health insurers to integrate this type of testing and service as part of a standard medical insurance package. He says:
“There is a strong health economic argument to incorporate genomic screening into an insurance package. Catching a disease early or even preventing it must surely be in everyone’s best interests rather than wait until the disease is established and expensive treatment is almost certainly needed”.
Dr Nierenberg uses the example of HIV testing and the insurance industry to describe how he believes genetic testing will evolve over time
“… Back in the 1980’s HIV testing was hated and received a lot of abuse. However, over time the test has become familiar and everyone is comfortable with routine HIV testing”.
Dr Nierenberg says Navigenics is also looking to expand it results service to become fully consumer friendly. They are working on communication with its members via cell phone and other internet options. However none of these initiatives can be implemented until the company is satisfied that data can be securely anonymized.
Navigenics, at some stage, may well request permission to use a member’s DNA in anonymized research studies. This will bring up a wealth of ethical issues such as informed consent at every stage of the research and explanation for what research the DNA will be used for.
To learn more about the company and its thoughts on key issues surrounding the genomics industry, look out for the following articles which will be posted throughout this week.
Navigenics #4 – Low penetrance v high penetrance genes
Navigenics #5 - Corporate or pragmatic genomics
Navigenics #7 – The barriers to success!
This does sound like a Big privacy issue to me.. I wouldn’t like information held against me and i definitely wouldn’t want it stored on a server.. no matter how secure.