Will short term governments ever agree to long term genetic testing?

Will the state health services agree to spend money for the really long term? The evidence from other areas of health is that short termism trumps every time. First past the post systems particularly avoid longer term investments. Yes, we could develop the ability described, but the chances of doing it are very small. Aside from the political aspects, there is the ethical issues raised by various bodies and charities. The potential could be rationed away, which could lead to the testing going “private”. In this event the richer families would avoid genetic disease in their offspring, whereas poorer people would cause a continuing drain on the state resources….

Image result for genetic testing cartoon

Imram Ranzam reports in the Sunday Times 28th April: Testing couples’ DNA could wipe out genetic disease.

People should test their partner’s DNA before starting a family to minimise the risk of inherited disease — and may have to decide to stay childless, according to a senior Harvard professor.

About 5% of babies have inherited conditions — such as muscular dystrophy, cystic fibrosis and sickle-cell anaemia. There are about 7,000 such conditions, all due to parents being badly matched genetically.

In an interview with the science magazine Discover, George Church, a professor of genetics who was one of the architects of the human genome project, argues that the world could be rid of such diseases if couples took DNA tests before having a family.

To eliminate the conditions, millions of couples would be advised not to have children, to use IVF — so embryos can be screened — or to consider genetic testing of their unborn baby with a view to termination.

While testing might be expensive, Church points out that the illnesses last a lifetime and cost millions to health providers, such as the NHS. “It [testing] will go exponential quickly,” he said.

In Britain, genetic diseases are a growing problem among some Asian and other ethnic communities where it is common for cousins to marry. A report from Bradford city council said such relationships were a significant factor in deaths from genetic abnormalities.

Some Jewish communities face similar issues. About 20% of Ashkenazi Jews are carriers for at least one severe recessive genetic disorder, such as Tay-Sachs disease.

Lauren and Richard Kayser, a Jewish couple from north London, learnt they were carriers only after their daughter, Lia, was born three years ago. She was given the all-clear but the couple chose to use IVF when they added to their family. Twins Macy and Ruby are 10 months old.

Jnetics, a charity set up nine years ago to help prevent and manage Jewish genetic disorders, charges £190 a person so that would-be parents can assess the risk.

Katrina Sarig, executive director, said: “Genetic testing has been a game- changer in our community and . . . what we’re doing is transferable. It’s empowering to know what we are carriers of if we are able to do something about it.”

Image result for genetic testing cartoon

This entry was posted in A Personal View, Rationing, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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