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203.343!

Follow-up to the Ethics


Guest Lectures!
Week 9!
Austen Ganley, September 21st, 2015

Ethics guest lectures followup


Generally your lectures were good, with good
information!
However, some of the information wasnt
particularly relevant for personal genetic data:
it was relevant if you have the disease!
Also, existing research on the ethical issues
relating to personal genetic data often wasnt
well covered!
I will go over some of the areas to
complement what was presented!

Do you want to know?


Key issue, both for genetic testing for specific
medical conditions and for direct-to-consumer
genetic testing!
Research has been conducted on personal
responses to genetic testing results!
For example, in 2013 23andme looked at the
response of customers to BRCA mutation results!
Surveyed 32 BRCA1/2 positive customers and
31 matched BRCA negative customers by phone
(but this is only about 20% of all those invited) !

Who has rights to these data


and the info they give?
One of the major issues with personal genetic
data is privacy!
Another privacy issue, in addition to those
discussed, that relates specifically to scientists is
privacy versus use in research!
A major component of ethical approval for
human genetic research is anonymity!
Often this means we cannot even give out the
information to the person themself !

Who has rights to these data


and the info they give?
To get around some of these issues, some
researchers are using a trust-based system!
Involves more active participation of the
volunteers!
Still some concerns, though!
See the Science news article and reply!

Will it help with my disease?


Personal genetic testing gives patients, for
example cancer patients, hope that something
can be done!
This hope is not always realised. For example:!
Genome sequencing reveals nothing of use!
Genome sequencing reveals possible treatment,
but too expensive!
Genome sequencing reveals possible treatment,
but not accessible (other reasons)!

Would it be better to not have tried in the first


place?!

Who does this knowledge effect


and how?
As Kim Gamet told us, genetic data is not like
medical condition data it is not uniquely ours!
If people have personal genetic data that
impacts others, how do they respond?!
Also the question of whether doctors should
disclose personal genetic data to relatives
(including after a patient has died)!
Surprisingly little research on this!

FDA and 23andme


As we heard, 23andme are prevented from
disclosing health (and trait) risk factors by the
FDA in the US!
Some of the arguments for and against the
stance taken by the FDA are in these two
articles:!

GINA
Genetic Information Nondiscrimination Act!
Passed into law in the US in 2008!
Protects against discrimination based on genetic
data!

Critical issue:
With respect to these ethical issues, much of
the debate comes down to:!
What do we stand to gain versus what do we
stand to lose?!
While science is not necessarily in a strong
position to judge what we stand to lose, it has
a critical role in determining what we stand to
gain!
Specifically, how confident can we be in
gaining a perceived benefit!
!

OpEd Assignment
You have now been through a lot of the
technical and genetic issues behind personal
genomics!
You have also been through a lot of the
ethical issues behind personal genomics!
You will need to produce an OpEd that ties
these two areas together, demonstrating a
depth of knowledge!
Next lecture a media relations person will
come to talk specifically about how to
structure/write an OpEd!

Therefore, Question:
What is it that you feel you do
NOT know enough about yet
to be able to successfully
write an OpEd??!