Ethics of Huntington's Genetic Counseling

Question 1

What does ELSI stand for?

Answer 1

ethical, legal and social implications

Question 2

Wha tis the goal of predictive genetic testing?

Answer 2

to get an accurate risk assessment, hopefully reducing morbidity and mortality

Question 3

What percentage of those in HD families opt for testing? Why don’t tehy?

Answer 3

only 5%!

those who don’t site emotional and confidentiality risks, of which there are many

Question 4

What would the clinical genetic testing process entail?

Answer 4

referral to an HD specialty clinica

receive multi-disciplinatry counseling

informed consent

genetic test

multi-disciplinary counseling regardless of wheter they’re positive or negative for the gene - continue over years in follow-up

Question 5

What does prenatal exlucsion testing imply?

Answer 5

when a parent does not what to know personally, but want to assure that their offspring won’t be affected.

Question 6

How does genetic testing for HD stand in terms of beneficience?

Answer 6

do good -

knowledge is power in this case, but not for everyone

helps with planning for life

Question 7

How does HD genetic testing stand in terms of non-maleficence?

Answer 7

do no harm

consider emotional/psychological trauma, family and social harm, privacy and confidentiality

Also consider the fact that the test can be indeterminate with there are 30-40 CAG repeats AND it doesn’t give you any idea of when symptoms will dvelop

Question 8

How does autonomy play into HD genetic testign?

Answer 8

informed consent is huge

(age of consent for this is 18)

Question 9

What are the quetsions of justice in HD genetic testing?

Answer 9

is it ethical to test for diseases in which there is no cure?

Is cost worth it?

Issues of genetic discriminnation