NHS Launches Telling Stories: Understanding Real Life Genetics

by Dr. Hsien-Hsien Lei
Posted July 4, 2007 in DNA and Disease, DNA in General

The UK’s NHS National Genetics Education and Development Centre has launched a new website – Telling Stories: Understanding Real Life Genetics. The site includes interview transcripts, suggested activities, points for reflection, key quotes, links, and video clips. Better than straight clinical facts from a textbook, real life stories help to educate and illustrate the impact of genetics on our lives.

Six key themes are covered by the resource:

1. Genetic conditions
2. Inheritance
3. Genetic intervention
4. Issues raised
5. Professional role
6. Nursing competence

I took a look at the materials available for Turner syndrome (one normal X chromsome paired with an abnormal X or no matching X at all) since I’d read yesterday about the Canadian mother who’d had her eggs frozen for use (in the future) by her seven-year-old daughter who has the condition which results in infertility.

In Collette’s story, she says:

I feel that I have had everything taken away from me. Lack of fertility is very hard to live with and many TS women have to find fulfillment in other ways.

Sian said:

There are issues around being an infertile woman in a society where there is a lot of emphasis on parenthood and becoming a mother. Being infertile is perceived as tragic and something that you need to overcome.

After reading these two women’s accounts, I found it less strange that 35-year-old Melanie Bolvin Boivin decided to have her eggs frozen for her daughter with Turner syndrome. I don’t buy the idea that should her daughter choose to have children using her mother’s eggs it will cause irreparable harm to family dynamics and result in “genealogical bewilderment.” There are plenty of families in which children are raised by relatives other than their parents. Certainly, the technology that allows a woman to give birth to her half-sister is unusual but the situation of a much older sister raising younger siblings in the role of a parent is not, e.g., orphans.

If you’re interested in people’s personal encounters with genetics, Geneforum also has a section called Your Stories to which you can contribute using their form. And, of course, I’m always interested in telling your story here on Eye on DNA and would be honored if you’d email me.

via PHG Foundation

Tags: genetics, genes, dna, education, nhs, uk, turner syndrome, melanie boivin, ivf, infertility, genome, genomics, diseases, illness, health, medicine

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3 Comments

Comment by David Bradley

2007-07-04 15:43:53

We are on the cusp of a new age in human evolution, we are beginning to find ways to manipulate fertility way beyond what was possible even just forty years ago. It began in the late 1970s with the first test-tube child, Louise Brown, who gave birth earlier this year, or perhaps even in the advent of the contraceptive pill that allows women to defer children. It continues with announcements of sperm, eggs, and foetuses that can be stored cryogenically for future treatments, and the possibility of cloning and sperm-free emrbyos looming on the horizon.

db

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Comment by Hsien

2007-07-06 10:25:15

Whoa. You sound like a documentary voiceover here. And you’re making me a little nervous over the brave new world ahead.

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Comment by David Bradley

2007-07-09 10:59:08

Teehee…yes I hear voiceover work can be very lucrative

db

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