SECTION: CAPITOL HILL HEARING TESTIMONY

LENGTH: 1257 words

COMMITTEE: HOUSE GOVERNMENT REFORM

SUBCOMMITTEE: CRIMINAL JUSTICE, DRUG POLICY AND HUMAN RESOURCES

HEADLINE: ETHICS AND CLONING

TESTIMONY-BY: ELIZABETH HOWARD, PATIENT,ADVOCATE

BODY:
STATEMENT OF ELIZABETH HOWARD PATIENT,ADVOCATE On Behalf of the COALITION FOR THE ADVANCEMENT OF MEDICAL RESEARCH

BEFORE THE SUBCOMMITTEE ON CRIMINAL JUSTICE, DRUG POLICY AND HUMAN RESOURCES HOUSE GOVERNMENT REFORM COMMITTEE

May 15, 2002

Good afternoon Chairman Souder and Members of the Committee. Thank you for the opportunity to testify today on the importance of somatic cell nuclear transfer (SCNT), also known as therapeutic cloning or regenerative medicine. My name is Elizabeth Howard, and I am here on behalf of the Coalition for the Advancement of Medical Research (CAMR). The Coalition consists of over 70 universities, scientific and academic societies, patient's organizations, and other groups that are dedicated to supporting and advancing stem cell research. Today, I know that I am speaking for millions of Americans living with MS, spinal cord injuries, ALS, Parkinson's Disease, and many other less well-known illnesses that are equally as tragic - such as Canavan and Kernicterus -- who may benefit from therapeutic cloning. I enter this debate from the patient's perspective. Almost three years ago, I gave birth to a beautiful, healthy girl named Allison. My pregnancy and delivery were textbook perfect. Everything about Allison checked out fine, and there was great joy in my family about this new life and its promise. Back then, I was oblivious that all expectant mothers are at risk of having a Rett Syndrome daughter. That I might be one of those moms who would watch in horror as her happy, healthy baby girl did not develop properly and would lose the few acquired skills from which she derived joy and contact with the outside world.

Rett Syndrome strikes girls very early in their development, anywhere between the first 6-18 months of life. It arises from a non-inherited mutation in the McCP2 gene on the X chromosome. McCP2 plays an important role in brain growth and function. Because Allison's Rett Syndrome onset was particularly early, she has never crawled, walked, or talked. After undergoing numerous tests for over two years involving many big needles, she began continuous, compulsive hand-wringing, which is the hallmark of this Syndrome. We finally had a diagnosis, but with this learned that Allison might be trapped at the six-month developmental level forever.

Sadly, it is easier now to point out the short list of abilities Allison does have than enumerate the long list of skills she should have obtained by now but hasn't.She still manages to chew food (with assistance since she can no longer use her hands); she can sit up very slouched, but still falls over; she has a contagious laugh, and she beams a wonderful smile. Finally, she makes excellent eye contact.

With her penetrating blue eyes, Allison speaks to me, urging me to do everything that I can for her to make her life less traumatic and more whole. She compels me to push for advances in science - like SCNT - that hold promise to protect her from the many dreadful manifestations of Rett Syndrome. These include seizures that can significantly setback development; breathing abnormalities that can be so intense the girls pass out; gastrointestinal problems, which typically lead to feeding tubes; curvature of the spine frequently resulting in complicated scoliosis surgery; and/or dying suddenly while sleeping for no obvious, immediate reason. For now, there is no cure or treatment for Rett Syndrome.

Let me state here for the record that the Coalition for the Advancement of Medical Research supports efforts to prohibit human reproductive cloning. However, it is imperative that advancements in SCNT, which is distinct and separate from reproductive cloning, not be stifled or outlawed since this may be one of the best avenues for ensuring that girls like Allison and the millions of Americans suffering from other disorders might some day live a more meaningful life. And future generations of people afflicted by these disorders - perhaps our own children, and their children -- might never have to endure what this current generation has suffered through. It is not my intent to exaggerate the promise or timing of SCNT research, and I certainly do not profess to have a scientific background. But how can I look into my daughter's sparkly blue eyes and not assure her that scientists and lawmakers are embarking upon an area of research -- supported by 40 scientific Nobel Laureates -- that might allow for her to have a happier ending?

I understand that the word "cloning" has caused many individuals to imagine the worst possible abuses. But allow me to make a critical distinction between the use of cloning technology to create a baby - reproductive cloning - and the therapeutic cloning techniques central to the production of breakthrough medicines, diagnostics, and potentially vaccines to treat diseases like Parkinson's, Alzheimer's, diabetes, heart disease, various cancers, paralysis resulting from spinal cord injury, and perhaps even Rett Syndrome. Therapeutic cloning will not produce a whole human being. Due to its promise to enhance the quality of life of the young and old suffering from various devastating, often life-threatening, disorders, how can we not allow this research to advance?

Somatic cell nuclear transfer may prove to be a vital tool in allowing scientists to fully develop the promise of stem cell research. Somatic cell nuclear transfer involves the use of a donor's unfertilized egg and a patient's own cells. Eventually, scientists hope to learn enough about how the egg works to replicate it in a lab and no longer need eggs. The research could allow a patient's own genetic material to be used to develop stem cell therapies specifically tailored to that individual's medical condition, thus not triggering an immune rejection response. In other words, using somatic cell nuclear transfer could repair patients with their own cells. We strongly oppose all efforts to ban therapeutic cloning.

Mr. Chairperson, it is likely that we will continue to be confronted with scientific advances that pose difficult social and ethical questions. It seems to me that we often learn things that frighten us or make us uncomfortable at first. We should not let the fear felt by some of us prevent the rest of us from alleviating suffering. Indeed, we live in a pluralistic society where a number of views can be accommodated. There are Americans who believe research on animals is unethical. I can respect their views, and even allow them not to avail themselves of the fruits of that research. Yet we do not let them keep me or my family from taking advantage of the knowledge gained by that research.

The present momentum in biomedical research, and the profound implications of what we are learning, will inevitably raise public concerns. Yet an across-the-board ban on all types of human cloning would significantly setback advances in research that offers hope for Rett Syndrome girls and the numerous other Americans struggling on a daily basis just to make it past another uncontrollable seizure or tremor, to breath without pain, to use their eyes as the onset of blindness occurs, and to continue walking before the amputation of their legs is required.

On behalf of the Coalition for the Advancement of Medical Research, the countless Americans who stand to benefit from therapeutic cloning, and the family members and friends who love them, I again thank the Committee for its deliberations and for the opportunity to speak on this issue.



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