Perhaps the most widely-debated issue that genetic testing has created is the option of terminating gestation on the basis of results indicating a life-limiting disorder. Although this discussion comes with its own problems and ethical questions, a more overlooked topic surrounds adult genetic testing for later-onset conditions such as Huntington's disease. This is an autosomal dominant, neurodegenerative disorder resulting in chorea and mental decline between the ages of 30 and 50. The hidden implications of these genetic tests is explored by Bishop and Waldholz (1991, p322) in their book, Genome. These issues include the possibility of social and economic discrimination, such as potential biases against those with pre-diagnosed conditions in the workplace or by insurance companies maximising profit by exploiting those who will need the support most in the future.
Aside from the problems outlined by Bishop and Waldholz, other concerns also become apparent: what education and mental health guidance is on offer to those facing the results of these genetic tests? What is being done to ensure that people are able to make supported decisions regarding their results, and are fully informed during each section of the process? Since Genome was written over three decades ago, it acts as an interesting guideline to compare to today's legislatures and technology surrounding genetic testing. With this, we can view what has developed over recent years, and also what still remains to improve upon.
In October 2018, the UK governmental Code on Genetic Testing and Insurance was put in place to tackle financial disadvantages experienced by many after receiving the results of genetic testing. The principle of the code is that insurance companies no longer have the right to require an applicant to undergo diagnostic or predictive genetic testing before receiving insurance, unless for a test relevant to the terms of the insurance itself. Furthermore, it is now against the law for insurance agencies to demand the results of a test of a blood-related family member, during the insurance cover, or when the result was obtained as part of a clinical trial. This is in the hopes that more people with a genetic history or predisposition to diseases such as Huntington's will feel more in control of their results and are able to make a better-informed decision to obtain a genetic test without the concern of data sharing and of bias based on their genetics.
The ability to recognise potential ethical and legal dangers in the field of testing has thus proven critical in its development: as much as genetic technology advances, so must our legislations.