Consider the advances in genetic analysis that enables the development of genetic testing for the provision of health services. For this discussion you need to understand what genetic testing is, and the aspects of human genome that it is isolating as the distinguishing features in people.
The issue is that even when you can collect data, should you collect it is another issue.
First consider that medical decisions are now being proposed on the basis of genetic make up. Such as the specific drug that may be most effective for a disease can depend on the genetics of the individual. Also the likelihood an individual will develop a disease is linked to genetic testing. This new approach to health services raises issues of:
- How to handle the telling of news about ‘bad genes’ to patients
- Does this information really mean anything, it is just a probability they will develop the disease
- Will insurance companies start to use it to adjust personal insurance rates
- Drugs that work for a small group will be too expensive. When is it established that there is only a small market for them, the larger market drugs will be prioritised
You can look at the Genetic test registry site and consider how the genetic test data is being used. Also there is a file of all the DNA tests relating to health
Genetic testing and Indigenous peoples
“Indigenous peoples have the inherent and inalienable right to freely determine what is best for them and their future generations in accordance with their own cultures and world views.” (www.treatycouncil.org).
Effect of history
Genetic testing relating to Indigenous people is sometimes considered controversial because of previous attempts at establishing racial differences which were linked to theories of inferiority. Furthermore there are issues of ownership, patentability, benefit sharing and perceived disregard for free, prior and informed consent when working in different cultural frameworks and across language barriers.
Considering that many Aboriginal Australians do not use English as their first language, and do not always identify as an individual over and above their identity within a community, the understanding of what a genetic test may entail can be sketchy amongst Aboriginal people.
Those relying on genetic data should consider the concerns of Indigenous peoples about the laws and ethics of genetic testing, as well as the spiritual and historical issues, from Berg K, (2001) – The ethics of benefit-sharing. Clinical Genetics: 59(4); 240.
An ethical approach to genetic testing for Indigenous peoples (and in fact all populations) requires:
- protection from racial discrimination
- preservation of human rights
- prior informed consent of individuals
- retention of a population’s cultural self-determination
from Mgbeoji I (2007)
Research
Is ths use of genetic testing for specific health issues, the right purpose for this technology? Could we develop tests for other variations that would be more helpful and less contentious.