Giving people genetically tailored medicines does not in itself pose many ethical issues: the main problem lies in that doctors would have to genetically profile each patient before they could prescribe. This raises issues of confidentiality and ownership, posing such questions as: should patients be required to have genetic profiling and who should have access to the information? The danger to patients is that genetic information could be useful to insurance companies and employers who might use it for their own financial benefit. The question of whether or not patients should be required to have genetic profiling and how that information is used raises many issues for the individual.
In 2008 George Bush signed the Genetic Information Nondiscrimination Act (GINA), which made it illegal in the USA to discriminate against someone because of the genes they carry. The UK currently has no such legislation in place.
Do you think that is inevitable that companies will genetically test their customers or employees? Is this right?
Genes carry some information that you may not wish to know. One possibility of such tests might be the unexpected discovery that someone's father is not the man they always believed to be 'Dad'. Or someone else might suddenly discover that they had inherited a genetic disease. Such unexpected information can have huge consequences.
How doctors manage this information and how it is passed on will be crucial to the uptake of pharmacogenetic testing.
Should patients be able choose to 'opt out' of being told about unexpected information that results from pharmacogenetic testing? What if that unexpected information was about a possibly fatal disease such as an inherited susceptibility to breast cancer?
Privacy versus furthering medical knowledge
The information coming out of pharmacogenetic tests has the potential to be both medically beneficial and emotionally damaging to a person. It is useful yet potentially higly confidential and sensitive.
But this information, as well as looking at specific medical issues, offers a great deal of extra benefit to medicine in general. Storing and comparing genetic information may lead to new breakthroughs in understanding the relationships between genes, disease and the role of drugs.
What rules should there be for the use and storage of this data?
- Should all stored data be anonymous?
- Should patients be able to opt in or out of having their data stored and shared?
- Who 'owns' this information?