ngin - Norfolk Genetic Information Network

18 December 2002

HUMAN GENETICS - NEWS AND A CALL FOR ACTION

The misuse of new genetic technologies is not only a threat to our environment  and food supply, but has extraordinary social implications that extend into the very nature of what it is to be human. We ignore these issues at our peril.

2 key organisations that are actively confronting the problems arising out of technologies impacting human genetics are, in the UK, 'Human Genetics Alert' and in the US the 'Center for Genetics and Society'.

Below is CGS's latest newsletter GENETIC CROSSROADS which provides not only a very useful news roundup but includes an important call to action from Human Genetics Alert regarding a public consultation in the UK on the acceptability of the sex selection of babies.

We join CGS (item 2 in their newsletter) in urging you to visit Human Genetics Alert's web site for more information on sex selection and for an electronic postcard to express your views on the issue:
http://www.hgalert.org/whatsnew/
Views of people outside the UK will be taken into consideration.

There's more on HGA's campaign from David King in item 2 below.

GENETIC CROSSROADS also includes news of a group of mostly European academics and bioethicists who have released a signed statement declaring it ethically acceptable to create genetically modified children.

Another item shows how official bioethics committees are being established and manned by scientists and others connected with scientific research to the exclusion of the diversity of ethical opinions traditionally expressed within our societies. Bio-ethics increasingly equals the 'ethics of the scientific establishment' which has a vested interest in pushing a self-interested research agenda.

for an introduction to issues arsing out of human genetics:
http://ngin.tripod.com/gmhuman.htm

1.GENETIC CROSSROADS #27 - Center for Genetics and Society
2.A request for action on Sex Selection from Human Genetics Alert

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1.GENETIC CROSSROADS #27

Center for Genetics and Society
December 17 , 2002
CONTENTS
I. 2002: AN ASSESSMENT
II. NEW ADVOCACY OF INHERITABLE GENETIC MODIFICATION
III. UPDATE ON THE PUSH FOR SEX SELECTION
IV. TWO WORKSHOPS ON HUMAN GENETIC TECHNOLOGIES AT THE WORLD SOCIAL FORUM
V. BOOKS AND REPORTS
1. New study: Bioethics as "the ethics of the scientific establishment"
2. China, "The Cloning Superpower"
VI. CGS NEWS: SYLLABI AND RESOURCES FOR EDUCATORS ON CGS WEB SITE
VII. NEWSLETTER SUBSCRIPTION AND FORMATS

I. 2002: AN ASSESSMENT

This past year has been both encouraging and sobering for those working for responsible societal governance of the new human genetic technologies. More countries, including Australia and Norway, have prohibited human cloning. Canada and other countries are considering legislation to establish comprehensive oversight of new human genetic and reproductive technologies. And the United Nations has taken the first steps towards an historic international convention banning unacceptable applications of human cloning technology.

At the same time the development of technologies that pave the way for new forms of genetic discrimination and high-tech eugenics continues. Advocacy of a new commercial eugenics and of eugenic ideologies continues to grow. And important efforts to craft responsible social policy have been delayed, due largely to the refusal of the two constituencies most heavily politically engaged - religious conservatives and the biotech/biomedical industry - to consider reasonable middle-ground positions that could break the stalemate.

Of special concern are repeated claims by rogue scientists like Severino Antinori that the births of cloned children are imminent. There is no way to tell if these claims are bogus or true. But if a cloned child is in fact born sometime soon, world leaders and world civil society will need to respond in a way that ensures that laws prohibiting further human cloning are enacted in short order.

II. NEW ADVOCACY OF INHERITABLE GENETIC MODIFICATION

A group of 15 mostly European academics and bioethicists has released a signed statement declaring their belief that it would be ethically acceptable to create genetically modified children, provided the procedure was "safe and effective." The statement grew out of a conference on inheritable genetic modification held in Brussels in early December  and sponsored by the International Forum on Biophilosophy. The statement declares, "No interpretation of human dignity has been identified that stands in the way of the development of IGM."

The press release announcing the statement
(http://www.eurekalert.org/pub_releases/2002-12/sari-ess121302.php) was issued by the Science and Religion Information Service. The director of SRIS, Brent Waters, is the author of Reproductive Technology: Towards a Theology of Procreative Stewardship (Darton Longman & Todd Ltd, 2001). The organization's web site states that it is funded by the John Templeton Foundation, which has also underwritten other projects that seek to promote a religious and ethical framework that would embrace human genetic redesign.

For more information on the promotion of the new eugenics, see
http://www.genetics-and-society.org/r.asp?s=gc27&t=politics/promoencouraging.

III. UPDATE ON THE PUSH FOR SEX SELECTION

The United Kingdom's Human Fertilisation and Embryology Authority (HFEA) recently announced that it has initiated a public consultation on sex selection. The consultation covers all three types of sex selection: 1) pre-natal testing and termination of pregnancy, 2) pre-implantation genetic diagnosis and selection of embryos (PGD), and 3) sperm sorting-the selection of sperm carrying either an X or Y chromosome.

The HFEA does not currently allow PGD for non-medical sex selection. No legislation in the UK addresses sperm sorting, and UK fertility clinics are now marketing it to Indian communities there. The HFEA is considering three options: that sperm sorting be banned, be allowed but regulated, or be allowed to continue without regulations.

In the United States, no federal laws or regulations cover sex selection. Sperm sorting is increasingly being commercially advertised. Some US fertility clinics openly advertise the use of PGD for non-medical sex selection, in spite of widespread condemnation of this practice. Ethnically targeted marketing of sex selection also takes place in the US.

Human Genetics Alert, a nonprofit public interest organization based in London, is organizing a campaign to encourage the HFEA to strengthen its opposition to non-medical sex selection. As its background statement explains, permitting parents to choose the sex of a future child on the grounds of "preference" would make it far more difficult to draw lines against genetic modification to select or engineer children for characteristics such as appearance and IQ.

Although far from perfect, the UK regulatory system is often regarded as a good model for regulation of reproductive technologies. The results of the current consultation could set an important precedent. Sex selection is an issue of global concern, and the HFEA is likely to take the views of non-UK citizens into account.

We urge you to visit Human Genetics Alert's web site at
http://www.hgalert.org/whatsnew/ for more information on sex selection
and the HFEA consultation, and for an electronic postcard to the HFEA to express your views on sex selection.

IV. TWO WORKSHOPS ON HUMAN GENETIC TECHNOLOGIES AT THE WORLD SOCIAL FORUM

The January 23-28 meeting of the World Social Forum in Porto Alegre, Brazil will include two workshops on the new human technologies.

"Genetics and Social Justice: The Global Politics of the New Human Genetic and Reproductive Technologies" will be co-sponsored by the Center for Genetics and Society and Ser Mulher, a Brazilian women's organization.

Another session, "Human Genetics in the Context of Health," is being organized by the Medical Genetics Service, Hospital de Clinicas de Porto Alegre. CGS Associate Executive Director Marcy Darnovsky is among the presenters.

The World Social Forum is an international gathering of groups and individuals challenging exploitative institutions and envisioning a society "centered on the human person." The Forum is expected to attract nearly 100,000 participants. See
http://www.forumsocialmundial.org.br.

V. BOOKS AND REPORTS

1. New study: Bioethics as "the ethics of the scientific establishment"

A team of European scholars has published a survey and analysis of European bioethics committees. They conclude: "[T]he institutionalisation of bioethics raises serious problems concerning the development of public debate in the field of bioethics. In particular, there is the serious danger of suppressing the diversity of ethical opinions traditionally expressed within our societies, and, instead, imposing upon society the 'ethics of the scientific establishment.'"

The authors note that the establishment of official bioethics committees in Europe came largely at the request of the scientific community, and that scientists and others connected with scientific research are disproportionately represented on these committees. The authors point to the Danish Council on Ethics (DER), with its extensive use of public consensus conferences, as a welcome exception.

See Jean-Christopje Galloux et al., "The Institutions of Bioethics," in Biotechnology: The Making of a Global Controversy, Martin Bauer and George Gaskell, eds., Cambridge University Press, London, 2002.

For background on the bioethics discourse, see
http://www.genetics-and-society.org/r.asp?s=gc27&t=politics/bioethics.html.

2. China, "The Cloning Superpower"

The January 2003 issue of Wired magazine contains the most detailed account yet of stem cell and cloning developments in China, including:

Cloned human-rabbit embryos created and cultured to the blastocyst stage by "Dr. X," who is keeping wraps on his work until patent applications have been approved.

Over 100 cloned human embryos created by Lu Guangviu of Xiangya Medical University in South-Central China, using human eggs obtained from the in-vitro fertilization clinic Lu established in 1980, the first ever in China.

Plans by the privately-funded "Union Stem Cell and Gene Engineering Co." in Tianjin to attempt to produce organs for transplants using cells from cloned human embryos within two years.

The account says that the Chinese Ministry of Health has issued a single-sentence statement forbidding reproductive cloning, but that this ruling is "toothless." See http://www.wired.com/wired/archive/11.01/cloning.html

VI. CGS NEWS: SYLLABI AND RESOURCES FOR EDUCATORS ON CGS WEB SITE

The newest addition to the CGS web site contains resources designed for educators at the university, high school, and middle school levels. The new Academic Resources section includes a syllabi compilation of undergraduate and graduate courses addressing the social, ethical, legal, and political challenges presented by human genetic technology.

The web page also includes sample lesson plans for high school and middle school instructors designed to engage students in thoughtful discussions about the implications of new human genetic technology. The new page can be found at

http://www.genetics-and-society.org/ r.asp?s=gc27&t=resources/academics

VII. NEWSLETTER SUBSCRIPTION AND FORMATS

For information on subscribing and unsubscribing to the CGS email newsletter Genetic Crossroads, and on changing between enhanced HTML and plain text formats, go to http://www.genetics-and-society.org/r.asp?s=gc27&t=newsletter.

For information about the Center for Genetics and Society go to
http://www.genetics-and-society.org/r.asp?s=gc27&t=about.

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2.A request for action on Sex Selection from Human Genetics Alert

"David S King" <david.king@hgalert.org>

As you may know, the Human Fertilisation and Embryology Authority (HFEA) in the UK, which regulates some reproductive technologies, is currently consulting the public about sex selection.  Human Genetics Alert believes that sex selection should not be permitted.  PLEASE SUPPORT OUR CAMPAIGN FOR A BAN ON SEX SELECTION, BY READING THIS MESSAGE AND THEN RESPONDING TO THE HFEA.

It is important to realise that this is not Œjust another government consultation‚.  If sex selection is permitted in the UK, it will be impossible to draw a clear line against the use of genetic technology to select or engineer human beings for other characteristics such as appearance, IQ, etc.  Sex selection is a global issue, and it is very important that the HFEA is aware that there is international concern on this issue.  Your views will be taken into account even though you may not be a UK citizen.

How to respond to the consultation

HGA has set up a web page (www.hgalert.org/whatsnew/), which gives more background on the issue and allows you to email the HFEA directly with your views.  Alternatively, you can find the consultation document on the HFEA website (www.hfea.gov.uk), and write to them.  Please also pass this message on to organisations and individuals who may be interested in the issue.  HGA greatly appreciates any support that you are able to give us on this issue.

Some background on sex selection and the HFEA consultation

There are three main techniques of sex selection: (i) pre-natal testing and termination of pregnancy (ii) pre-implantation genetic testing of embryos (iii) sperm sorting ˆ selection of sperm carrying X or Y chromosomes followed by insemination or IVF.

Pre-natal testing and termination is the main problem in India, where its use has led to the ratio of girls to boys declining to 927 girls to 1000 boys in 2001.  In some regions, the ratio is as low as 800 per 1000. In the UK, abortion purely on the grounds of sex would be against the 1967 Abortion Act, but it is possible for parents to ask about the sex of the child when undergoing ultrasound scanning.

Preimplantation genetic diagnosis (PGD) of embryos is regulated by the HFEA.  They do not currently allow its use for sex selection, except for avoiding sex-linked genetic diseases, like Duchenne Muscular Dystrophy.  HGA recognises that there are valid differences of opinion on whether it is ethical to do this, even to prevent genetic diseases. Therefore we are focusing our campaign on the use of sex selection for reasons of parental preference.

Sperm sorting has Œimproved‚ greatly in its accuracy over the last few years, and is now being offered by companies in the US.  This is what has led the Department of Health to order this consultation. Sperm sorting is not covered by any legislation in the UK, and HGA has discovered that clinics are marketing the technique to Indian communities in the UK (see www.hgalert.org/preleases/).

The HFEA is considering banning or regulating sperm sorting, which would require legislation, as well as the option of allowing the use of the technique to remain unregulated.

Why HGA opposes sex selection

This is a brief statement of our concerns. For more detail, see our campaign briefing, by visiting our sex selection campaign web page.

Sexism: sex selection is the exercise of sexism at the most profound level, choosing who gets born. In traditional patriarchal societies, such as in India and China, the preference for boys has led to huge imbalances in the sex ratio in the population. Indian communities in the US and UK are now being targeted by clinics who have no scruples about exploiting these traditional prejudices for profit.  In Western countries, there seems to currently be a preference amongst the majority white communities for girls, but the choices that are being made are still based on rigid, sexist, gender roles. Society must continue to fight sexist gender stereotypes, not allow them to dictate who is born.

Slippery slopes: if we allow sex selection by sperm sorting, it will be impossible to logically oppose the use of PGD for the same purposes, even though two previous HFEA consultations have explicitly rejected this.  After that, it will also be impossible to prevent choice of any other characteristics, such as appearance, height, intelligence, etc. The door to Œdesigner babies‚ will not have been opened a crack ˆ it will have been thrown wide open.

Commodification: selecting our children in this way turns them into just another human-designed consumer commodity, and undermines human dignity.  Once we start to pick and choose the characteristics of our children, we damage the unconditional love between parent and child, which depends upon accepting the child, whatever their characteristics. Although parents always influence and direct their children, parents who have chosen a girl, for example will tend to put greater pressure on her to conform to their hopes and expectations of her behaviour, rather than allowing her to become the person she is and wants to be.

Human Genetics Alert
Unit 112 Aberdeen House
22-24 Highbury Grove
London N5 2EA
t +44 (0)20 7704 6100
f +44 (0)20 7359 8423
info@hgalert.org
www.hgalert.org
http://www.ngin.org.uk

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