Human Genetics
Successive governments have believed lobbyists' claims that one day everyone would have a complete reading of their genetic make-up and the diseases they would get will be predicted and prevented. Lifestyle advice, medication and perhaps the food you eat would be tailored to personalised risk assessments, based on your genetic make-up and other information. Read why such genetic horoscopes are a dangerous myth.
The Genes and Marketing section highlights the poor predictive value of genetic tests which claim to identify people's risk of common diseases. The Genes and Health section discusses why there are reasons to doubt that these predictions will improve significantly in future, and highlights the role of conflicts of interest in promoting this idea.
The Genes in the NHS section describes plans to build a vast genetic database using electronic medical records linked to DNA in the NHS, including proposals to use babies' blood spots to do this.
Britain's police DNA database contains the largest proportion of any population in the world and other genetic databases are planned for medical research. These databases raise important issues about privacy and rights. The Privacy and Discrimination section highlights these issues, including attempts to create a back-door DNA database in the NHS by data-sharing of stored DNA and medical records with companies, the police and governments without consent.
GeneWatch would like to see:
- Regulation of genetic testing, so that it is used only in situations where it is of benefit to health and ethically justified.
- Legal safeguards to prevent genetic discrimination and erosion of privacy and civil rights.
- Public involvement in setting the health research agenda and restrictions on commercial conflicts of interest (including an end to the patenting of genes).
Recent Articles
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in BriefingsGeneWatch briefing: History of the Human Genome
23rd June 2010 -
in 2010GeneWatch PR: Nobel prizewinners, tobacco funding and the human genome
23rd June 2010 -
GeneWatch PR: Twins study obesity claims irresponsible, says GeneWatch UK
7th February 2008 -
GeneWatch PR: Regulation needed to prevent human genome from becoming massive marketing scam
29th October 2007 -
GeneWatch UK response to MHRA consultation
29th October 2007 -
in 2007GeneWatch PR: GeneWatch response to the Nuffield report on forensic use of DNA
17th September 2007 -
GeneWatch UK Submission to the Discrimination Law Review
6th August 2007 -
Scientific paper by GeneWatch's HM Wallace
This scientific paper looks at how data from twins and families is analysed. It concludes that the usual method is likely to exaggerate the importance of genetic differences in common diseases such as cancer. Breast cancer, for example, could often run in families because family members are exposed to the same environmental or lifestyle factors, rather than because relatives share some of their genes. If so, expensive research studies may be looking for "susceptibility genes" which do not exist or will be impossible to find.
Resources
- Press articles
- Nature: Want to do better science? Admit you’re not objective (9th March 2020)
- The Guardian: Sabisky row: Dominic Cummings criticised over 'designer babies' post (9th February 2020)
- Bloomberg: Scammers May Be Using DNA Testing to Defraud Medicare and Steal Identities (17th April 2019)
- The Guardian: The NHS should run a mile from the genome sequencing goldrush (7th February 2019)
- New York Times: The Golden State Killer Is Tracked Through a Thicket of DNA, and Experts Shudder (27th April 2018)
- Daily Mail: Minority Report for doctors! Plans to DNA test 3 MILLION people living in Dubai - including British expats - raises fears data will be used to discriminate (2nd March 2018)
- ashington Post: After secret Harvard meeting, scientists announce plans for synthetic human genomes (2nd June 2016)
- Nature: Plan to synthesize human genome triggers mixed response (2nd June 2016)
- The Guardian: Genetic engineering of humans has great potential, says Nobel winner (24th May 2016)
- Mercury News: Critics attack Harvard's secret meeting on human genome synthesis (13th May 2016)
- New York Times: Scientists Talk Privately About Creating a Synthetic Human Genome (13th May 2016)
- The Guardian: Human genetic engineering demands more than a moratorium (7th April 2015)
- Family Caregivers Unite! Who is Protecting the Genomes of English People? (30th December 2014)
- The Wall Street Journal: A Height Gene? One for Smarts? Don't Bet On It (31st January 2014)