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Discussion Groups => Research => Topic started by: mensfe_admin on 2018-10-22 14:10

Title: Home DNA test kits should come with a warning, says HFEA
Post by: mensfe_admin on 2018-10-22 14:10
24 September 2018 - by Rachel Siden
The UK's Human Fertilisation and Embryology Authority (HFEA) is urging companies that offer direct-to-consumer DNA testing to provide more comprehensive warnings to customers.
A recent paper presented to the HFEA board, oulined how egg and sperm donors, as well as donor-conceived people, could be impacted by direct-to-consumer DNA testing and 'matching' services which offer to connect customers who are genetically related to each other. DNA testing services could reveal someone's unknown donor-conceived status, or uncover the identity of a donor who believed they had anonymity.
'Donors who think the anonymity can be protected are suddenly discovering they can't,' said Nina Barnsley, director of the Donor Conception Network. 'Even if you don't upload your DNA anywhere, you can still be found. It's a new world and we are all playing catch-up,' she told The Guardian newspaper.
While popular DNA testing companies such as 23andMe,, and can only 'match' users within their databases, customers could still use a single match to track down other relatives through social media or birth and marriage records. And while these companies may disclose that unexpected genetic information may be discovered 'in the small print', the HFEA paper argues that customers may not be adequately warned of the risks, nor offered any support.
'We found no DNA testing and matching services that mention that a need for professional emotional support may arise from relatedness matching, or via further inference from matching,' stated the HFEA paper. 'No service offers professional emotional support to users, nor signposts to other available support.'

While the HFEA does not have the authority to force companies to provide warnings, the HFEA paper outlines a response plan that includes raising awareness of these risks and providing information and support through the HFEA website and clinics, and reaching out to DNA testing companies to have a dialogue about why greater warning should be provided on their websites.
HFEA Chair Sally Cheshire has pledged that the websites will be contacted and that these issues will be discussed with the UK's Department of Health, The Guardian reported.
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Prenatal tests are misused for sex-selection in the UK
24 September 2018 - by Rikita Patel
Prenatal tests offered by private UK clinics are misused for sex-selection and could lead to abortions of female fetuses, according to a BBC investigation.
Non-invasive prenatal testing (NIPT) involves screening fetal DNA in the mother's blood to identify genetic abnormalities, such as Down's syndrome. The technique also enables mothers to find out their baby's sex as early as nine to 10 weeks into pregnancy. However, when the test is implemented within the NHS  next month, patients will not be provided with this information.
In contrast, private clinics are revealing gender information from NIPT to expectant mothers. An investigation by BBC Two's Victoria Derbyshire programme has found that thousands of pregnant women are using online forums to discuss sex-selection through NIPT and their concerns about having a baby girl. Further, it found that clinics in Slough, Berkshire, were openly advertising gender determination testing.
Due to concerns that pregnancies could be aborted based on preference for a male child, the Labour Party has called for a ban on parents being told the sex of their baby.
Naz Shah, Labour MP for Bradford and shadow minister for women and equalities, told the programme that 'cultural practices in some communities, like the South Asian community, have a preference for boys' which is 'forcing them to adopt methods such as NIPT to live up to expectations of family members'.
In UK law, the sex of the baby is not one of the permitted grounds for abortion. However, if a woman is likely to face violence or abuse as a result of giving birth to a baby girl, a termination in the first 24 weeks could be lawful, as the Abortion Act states, if 'continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of the pregnant woman'. The act allows that 'account may be taken of the pregnant woman's actual or reasonably foreseeable environment'.
Speaking to the BBC, Tom Shakespeare, professor of disability research at Norwich Medical School and chair of the Nuffield Council on Bioethics' NIPT working group, said: 'The desire for sex-selection is a major driver of private-sector testing.
'But countries like China and India have recognised the problem of sex-selective abortion and so it's very difficult to get this information – in India it is illegal.'
If the UK permits the practice of releasing this information, nationals from those countries may travel to the UK for medical tourism, Professor Shakespeare said.
A Department of Health and Social Care spokesman told the BBC: 'The prenatal test is never meant to be used for determining the sex of a child. We will continue to review the evidence.'
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