As a patient association, an important aspect of our advocacy work is to encourage those with a known history of family members carrying the hereditary gene to be tested in order to confirm early on their genetic predisposition of manifesting the disease at some point in life (depending on the strain). Especially now with the feasibility for treatment or to get on clinical trials, the need to be genetically tested has become more pressing than ever before.
The clincher here however is that many individuals from families that have the hereditary form of amyloidosis are holding back from undergoing genetic testing due to the fear of discrimination when it involves the application for life or medical insurance. This issue is of course not limited to ATTR familial as there are many others with genetic diseases that face this same issue.
“For individuals at risk, insurance may become prohibitively expensive. Individuals may respond by refusing to be tested, for fear of becoming part of an uninsurable underclass. A refusal to be tested is not desirable from either a personal or public health perspective. A study at an American university has shown that:
..People who are using genetic testing are losing their insurance. And other people who should avail themselves of genetic testing are losing their lives to save their insurance ..
There is a tension between those individuals who wish to exercise their right to know their genetic makeup, yet keep that information private, and insurance companies which claim that individuals should not be entitled to deprive them of information that could impact on the company’s commercial interests. A further and even more complex tension is developing between individuals who do not wish to know their genetic makeup but still wish to be insured on standard terms, and insurers who may wish to gather more detailed medical information about an applicant via genetic testing .”
The question of whether to be tested or not without facing negative consequences needs to be discussed and answered because present advancements in technology and modern medicine are allowing specific genes and variants to be mapped out for diseases. Health insurance coverage should not be a mitigating factor that prevents potential patients from receiving available life saving treatment. In lieu of this dilemma, countries like Europe, United States and more recently Australia, have made a concerted effort in regulating the collection and use of genetic information by entities namely insurance companies. In New Zealand, the Privacy Act 1993 and the Health Information Privacy Code (HIPC) 1994 states the government’s regulatory duty in ensuring that private information of individuals be protected from the need to disclose details to third party groups.
The Act’s “personal information” are broadly defined as meaning “information about an identifiable individual.” The HIPC’s “health information” is defined as meaning information about an identifiable individual broken down to:
(a) information about the health of that individual, including his or her medical history; information about any disabilities the individual has, or has had;…
(c) information provided by that individual derived from the testing or examination of any body part, or any bodily substance of that individual;
(d) information about that individual which is collected before or in the course of, an incidental to, the provision of any health service or disability service to that individual;…
(i) an agency which provides health, disability or medical insurance, but only in respect of providing that insurance.
Both “personal information” and “health information” are broad enough, therefore, to include the fact that a person has undergone genetic testing, any discussions that the person may have had about her genetic testing, and any information about the identity of her biological relatives. The wide definition of “agency” in the Act applies to both public and private sector, persons or bodies which would include insurance companies. In the HIPC, “health agencies” expressly includes health insurers.
It is important for people with private insurance to understand and know their rights which involves the divulging of protected personal information. Many have fallen into the trap of assuming that when it comes time to apply for a pay-out on a reimbursement or other types of claim, their insurance company have complete access to all details of their medical history under the blanket clause of “privacy sign-off.” Life insurance policy goes a step further with the inclusion of “Your Declaration and Privacy Act 1993 Acknowledgements” that states:
(a) [the company] to obtain at any time from any employer, doctor, hospital, health agency, insurance office, government agency or any other person any information [the company] may require to perform, or complete any of the purposes in connection with which I have provided personal information to [the company].
(b) Any such person to release to [the company] any personal information the person holds concerning me.
No doubt there are still loopholes that allows insurance agencies to get away with the access of a person’s genetic information and thus resulting in exclusions or raised insurance premiums. Additionally, how the policy coverage differ from one another depends on the insurer company as well as the type of genetic predisposition.
The bottom line here is that for New Zelanders that have the hereditary type disease, there are no clear cut answers where it involves the procurement of private insurance after a genetic test is confirmed. But more information needs to be gathered and understood before a decision is made or the door is shut to genetic testing by individuals that may have the disease. The issue must be confronted because there are now life saving treatment available and to know is the first step to living without a dark cloud over our heads.
Excerpts taken from
Jensen, Pamela — “Genetic Privacy: The Potential for Genetic Discrimination in Insurance”  VUWLawRw 21; (1999) 29 Victoria University of Wellington Law Review 347
For more details of the paper please click here