The ethics behind your neurogenetics | Emma Yhnell | TEDxCardiffUniversity

[ccnon-zqlb]

I appreciate her bringing light to this topic and sharing her personal experiences. Genetics in medicine is becoming a widely discussed topic in all fields and even in our everyday lives with direct-to-consumer testing. She scratches the surface of the ethical questions that we should be asking ourselves when it comes to this information. The knowledge gained from genetic testing is invaluable to many but also comes with its own challenges that I don’t believe many are made fully aware of before testing. Many do not fully understand the intricacies of genetics and have a flawed idea that genetics is the most important element in determining one’s future. This idea ignores the multitude of other factors at play such as environmental factors and epigenetics and can have significant psychosocial ramifications on both sides. Not only do these results potentially affect our psyche, but unforeseen ramifications may later arise such as consequences for family members, confidentiality, and discrimination. Considering how rapidly the medical field is growing, we are forced to consider ethical issues that we have not previously encountered.

[mikefraumeni]

A very important topic and an excellent talk by this neurogenetics researcher. It is concerning that some people are given a psychiatric mental illness diagnosis, a non-organic diagnosis if you will, when in fact they have a neurological disease that could be found using genetic testing. This example below from the Kennedy Krieger Institute's Division of Neurogenetics in Baltimore, Maryland may interest some. URLs can't be posted on Youtube as I understand but if you search for "Unmasking Rare Diseases" you will find this article. Below is a snippet from this article. This person was originally given a DSM mental illness diagnosis of Conversion Disorder also known as Functional Neurological Disorder that was at one time known as Hysteria:

"Unmasking Rare Diseases"

"Five and a half years ago, Andrea, now a teenager, landed in Dr. Fatemi’s clinic with what she’d been told by another neurologist was a conversion disorder.
For the previous two years, her ability to walk had progressively worsened, her left leg bowing outward because her left foot wouldn’t rest flat on the floor. She’d been advised against medical treatment because, she was told by her doctor at the time, the condition was all in her head, her mother says.
Unconvinced, Andrea’s mother took her to Kennedy Krieger. There, they met with Dr. Fatemi and Julie Cohen, a genetic counselor with Kennedy Krieger’s Division of Neurogenetics." ...
Source: Kennedy Krieger Institute website