GESTIÓN EN SALUD PÚBLICA: BioEdge: When genetic tests are bombshells

domingo, 9 de junio de 2019

BioEdge: When genetic tests are bombshells

BioEdge: When genetic tests are bombshells

Bioedge

When genetic tests are bombshells

by Michael Cook | 9 Jun 2019 | 1 comment

A senior British health official has reminded Britons of an bitter consequence of genomic medicine – misattributed paternity. This is the technical term for a man who unknowingly raises a child which is not his.

Ian Cumming, head of Health Education England, told the Hay Festival last weekthat tests carried out for genetic illness are revealing that one person in ten is not genetically related to his father.

In the not-too-distant future, genome testing will be freely available. “But [this] is not without controversy,” he warned. “If you look at people who have had genetic tests within families for reasons other than trying to work out paternity, for one in 10 people your dad isn’t who you think it is.”

Doctors are facing a dilemma, he said: “Are we going to tell people: ‘That’s not your dad’ – or are we going to keep that information to ourselves? I don’t think that would be acceptable ethically.”

It is impossible to know what is the rate of misattributed paternity (also called paternal discrepancy) in the population. The 10% figure cited by Mr Cumming may be far too high. The rate cited in studies varies wildly, from 0.3% to 30%. An Australian expert, Professor Michael Gilding, of Swinburne University believes that the true figure is between 0.7% and 2%.

But, he says, it is painful to discover that your father is not your father. "There's no question that when people find these things out, it's really disturbing," he says. "It strikes to the heart of people's identity and their understanding of the world, and who they've modelled themselves on and how they form their relationships and their feeling of security. If they'd known growing up, it would have been very different. But if they find it out as an adult it contradicts all the information they've heard."

Michael Cook is editor of BioEdge

The news of a 17-year-old Dutch girl suffering from anorexia nervosa who died of 'euthanasia" flew around the world this week. It was an error. The Royal Dutch Medical Association (KNMG) clarified what happened: "She decided to stop eating and drinking to bring her own death. In The Netherlands, this is not considered euthanasia or physician assisted suicide." The media issued corrections and moved on.

I'm curious to know more about this sad story. In her autobiography, Noa said that she had been raped and that this had provoked a psychological crisis. Sadly, this could easily have been true. No one queried the truth of her story, possibly because sexual abuse is known to trigger anorexia. But without that back story, would the world have been so sympathetic to her decision to starve herself to death?

The KNMG says that stopping eating and drinking under medical supervision is not physician-assisted suicide. Really? She committed suicide and she was assisted by physicians. As Humpty Dumpty said, "When I use a word, it means just what I choose it to mean—neither more nor less." If Noa's death wasn't physician assisted suicide, then I'm a Dutchman.

Isn't the real news here something altogether different? Dutch doctors who were unable or unwilling to treat a 17-year-old rape victim for anorexia nervosa gave up on her and allowed her to kill herself. In her time of greatest need, they abandoned their patient.