A right to know? Should children be told when a parent’s genetic test reveals hereditary risks?

hzqqyuaajlrhwdqe
Credit: Hamilton College
This article or excerpt is included in the GLP’s daily curated selection of ideologically diverse news, opinion and analysis of biotechnology innovation.

What are the legal, professional and ethical, duties or responsibilities of researchers and clinicians in handling genetic testing and the knowledge that might be gained from it?

Case study 2

Patricia is a 45-year-old patient who has developed breast cancer; she’s tested for BRCA1 and BRCA2 mutations.

The test results come back and Patricia carries a mutation in BRCA1 known to be related to breast and ovarian cancer. Patricia also has three children, all of whom have a 50% chance of having inherited the BRCA1 mutation.

What if Patricia doesn’t tell her children of their risks? This is highly unusual, but clinicians wouldn’t be breaking the law by telling Patricia’s children that they are at risk.

Related article:  'We are all mutants': Why genetic testing struggles to provide answers

“In this example, if we don’t have Patricia’s consent to telling her children about their possible inheritance, then we might just tell them they are at risk of an inherited condition. We don’t need to tell her children anything about Patricia, we could limit ourselves to saying, ‘We have reason to believe you are at increased risk of an inherited condition’. To Patricia I might say, ‘I won’t tell anyone private information about you, but I may need to tell family members about their familial risk’,” [said geneticist Anneke Lucassen.]

Read the original post

Outbreak
Outbreak Daily Digest
Biotech Facts & Fallacies
Talking Biotech
Genetics Unzipped
a a b b a f ac a

Video: Death by COVID: The projected grim toll in historical context

The latest statistics, as of July 10, show COVID-19-related deaths in U.S. are just under 1,000 per day nationally, which is ...
mag insects image superjumbo v

Disaster interrupted: Which farming system better preserves insect populations: Organic or conventional?

A three-year run of fragmentary Armageddon-like studies had primed the journalism pumps and settled the media framing about the future ...
dead bee desolate city

Are we facing an ‘Insect Apocalypse’ caused by ‘intensive, industrial’ farming and agricultural chemicals? The media say yes; Science says ‘no’

The media call it the “Insect Apocalypse”. In the past three years, the phrase has become an accepted truth of ...
types of oak trees

Infographic: Power of evolution? How oak trees came to dominate North American forests

Over the course of some 56 million years, oaks, which all belong to the genus Quercus, evolved from a single undifferentiated ...
biotechnology worker x

Can GMOs rescue threatened plants and crops?

Some scientists and ecologists argue that humans are in the midst of an "extinction crisis" — the sixth wave of ...
food globe x

Are GMOs necessary to feed the world?

Experts estimate that agricultural production needs to roughly double in the coming decades. How can that be achieved? ...
eating gmo corn on the cob x

Are GMOs safe?

In 2015, 15 scientists and activists issued a statement, "No Scientific consensus on GMO safety," in the journal Environmental Sciences ...
Screen Shot at PM

Charles Benbrook: Agricultural economist and consultant for the organic industry and anti-biotechnology advocacy groups

Independent scientists rip Benbrook's co-authored commentary in New England Journal calling for reassessment of dangers of all GMO crops and herbicides ...
Screen Shot at PM

ETC Group: ‘Extreme’ biotechnology critic campaigns against synthetic biology and other forms of ‘extreme genetic engineering’

The ETC Group is an international environmental non-governmental organization (NGO) based in Canada whose stated purpose is to monitor "the impact of emerging technologies and ...
Share via
News on human & agricultural genetics and biotechnology delivered to your inbox.
Optional. Mail on special occasions.
Send this to a friend