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The Human Genetics Commission (HGC) is calling for a change to current legislation that contains confidentiality rules making it difficult for scientists to follow the progress of children born from screened embryos.
The Commission’s report, Making Babies: reproductive decisions and genetic technologies, also states that so-called “designer babies” will probably never exist outside the world of science fiction.
The authors of the report, which is published today, said fears that future technologies will allow parents to select for bright and beautiful babies were unfounded.
Baroness Kennedy of the Shaws, the chair of the Commission, called for a much wider public debate on the scientific, social and ethical issues surrounding screening.
She said that the right to choose was of paramount importance, but parents should never feel pressured into screening procedures, and society should not discriminate against people with genetic defects.
“Science, harnessed by society to prevent real suffering, is a social good,” Lady Kennedy said. “However, a culture which does not acknowledge that all humanity has a value, and that each one of us is capable of contributing to the social good, is a culture which is abandoning its ethical core.”
Lady Kennedy and Martin Richards, Emeritus Professor at the Centre of Family Research at Cambridge University and co-chairman of the working group that produced the report, said that scientists needed to be able to monitor the health of children born from screened embryos. They called for the Human Fertilisation and Embryology Act to be amended to allow scientists to ask parents for permission to chart the progress of their growing children.
The report says that research is also needed into the future lives of so-called “saviour siblings”, children conceived deliberately to act as donors to save a brother or sister threatened by inherited blood disorders and other diseases.
The HFEA, which regulates fertility clinics, has granted permission for pre-implantation genetic testing to be used for cystic fibrosis, Huntingdon’s disease, and an inherited form of bowel cancer. If an embryo is found to contain these genetic defects it can be discarded in favour of a healthy one.
Another controversial area surrounds sex selection for family balancing, currently not allowed in the UK but permitted in some other countries. Lady Kennedy said that the commission was divided on that issue.
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