Now is the time to draw the line

Dec 23, 2010 | Uncategorized

The 2008 Human Fertilization and Embryology Bill will shortly begin its passage through the House of Commons. On a three-line Government Whip they are steam-rollering through a Bill that allows the creation of animal human hybrids and “saviour- siblings” and which removes the right of a child to know their father.

At the last stages in the House of Lords the Government also signalled their support for a further provision: the use of dead people’s tissues to manufacture human embryos and animal-human hybrids – consent never having been given by the original donor. Repeat, without their consent. So, people who may have been inspired by genuine scientific and humanitarian concerns to donate cells and cell lines could now discover that their cells have been used to create an animal-human embryo that will then be experimented upon and destroyed two weeks later.
I opposed this provision and reminded Parliament of the organ scandal at Alder Hey Children’s hospital – whose reputation was mired by allegations of organ theft, body snatching, contemporary necromancy and the rest. The tragic damage to Alder Hey’s reputation happened because medical scientists believed that they had the right to take and use children’s organs without their consent.
At the time, Government Ministers said that “The traditional paternalistic attitude of the NHS, that the benefits of science and research are somehow self-evident, was no longer acceptable.”
The General Medical Council’s guidelines clearly state that “Obtaining consent is a process involving open and helpful dialogue, and is essential in clarifying objectives and understanding between doctors and research participants. One must not make assumptions about participants’ views but discuss matters with them.”
The Wellcome Trust put it even more succinctly:
“Implied consent was not welcomed as a model of the consent process. Implied consent was equated to no consent.”
Making assumptions about donors’ wishes and implying consent has been given is precisely what the Government now say they intend to do.
The impetus behind this decision came from a letter to the Times on 21st January, signed by scientists, many of whom are involved in embryo experimentation. They said there is a particular desire to derive embryonic stem cells by cloning using cells that have been well characterized over many years with supposedly untraceable donors.
It may be instructive to recall the story behind one of the most famous and widely used cell lines. These were removed from the cervix of an African American woman called Henrietta Lacks, who died on 4th October 1951 after cancer had spread through her body. The day she died, a scientist appeared on television with a vial of Henrietta’s cells. He called them HeLa cells, held them up to the camera, and said, “It is possible that, from a fundamental study such as this, we will be able to learn a way by which cancer can be completely wiped out”. However, the cells had been removed for use in research without either Henrietta or her husband David being fully aware of how they would be used. It wasn’t until more than two decades later, in 1975, that David Lacks accidentally discovered the truth about his wife’s cells. As his daughter-in-law later described “I wonder why they never mentioned anything to the family. They knew how to contact us”... So, if a scientist in Britain now wishes to create an embryonic clone of Henrietta Lacks, will they also be excused for not contacting her family?
Professor Ruth Faden, executive director of the John Hopkins Bioethics Institute has commented how
“In terms of informed consent, the Lackses’ story is a sad commentary on how the biomedical research community thought about research in the 1950s. But it was not at all uncommon for physicians to conduct research on patients without their knowledge or consent. That doesn’t make it right. It certainly wasn’t right. It was also unfortunately common.”
What was common in the 1950s and discredited by the events at Alder Hey is now in danger of being sanctioned with the full force of British law.
We also need to consider very carefully the pressures that can be put on parents undergoing IVF to donate human embryos or gametes and the pressure that can be put on a grieving parent when a child has died to donate cells and cell lines. How many such parents would want their eggs or cells to be turned into animal-human hybrids? How many will be truthfully told that this will be their destiny?
In the case of a child whose tissue was used to create a cloned embryo without their express consent , we also need to ask what provisions might be available to prevent all further use of such material for open-ended research if the child should subsequently be deemed competent and raises objections
What powers will then be available to that person to raise objections so as to prevent researchers from creating even more embryonic clones of them and further marrying their genetic identity with the members of other species?
The Government Minister in the Lords, Lord Darzi, spoke about the importance of striking “the right balance between the interests of the donor and scientific research carried out in the public interest”.
This proposal does not strike that balance. It tramples on human rights and arrogantly asserts the right of the State and researchers to claim ownership of other peoples’ bodies.
This Government Bill will shortly be debated in the Commons. And unless the conscience of this country – and the consciences of our MPs – can be roused, it will become law by the end of this year. As a truly great scientist, Albert Einstein, once put it: “The world is a dangerous place to live; not because of the people who are evil, but because of the people who don’t do anything about it.”

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