GENETIC SELECTION > THE GIFT > AUTHOR'S PERSPECTIVE

Writing The Gift

Nicola Baldwin

	Nicola Baldwin

As I was starting to work on this script, the idea of a ‘criminal gene’ hit the news - can you be born with a tendency to be a criminal? I soon realized this was only the tip of the iceberg. Genetics is an area of science as diverse as it is fast-moving. There is gene therapy, genetic engineering and the sci-fi sounding ‘Human Genome Project’, as well as the hectic commercial scramble among pharmaceutical companies to patent - that is to own - various bits of newly discovered genetic information.

As David Suzuki and Peter Knudtson point out in their book Genethics - 90% of all scientists who have ever lived are still alive and publishing today! Then there are the two and a half million families who live from day-to-day on the ‘front line’ of genetics - affected by the 4000 or so single gene genetic disorders such as cystic fibrosis or sickle cell disease. Over half of all deaths of children and young people are from single-gene disorders, and every year 1500 babies are born with a severe genetic defect. And this does not include more complex multifactorial conditions such as cancers, which we are learning more about all the time....

Where do you begin writing a play about all this?

For me, the bottom line was this - genetics is the study of heredity. It has to do with the information in our cells that makes us who we are. This information comes to us from our own parents and we will pass it on to our own children. Genetics is about families.

So I decided to write about a family. I called them the Kaye family. The Kaye family has two distinguishing characteristics - firstly, a marked excellence in sports among some family members and secondly, a latent ‘rogue’ gene that causes a condition called Friedreich’s ataxia. The story takes us from the present day when Annie Kaye (16), a promising footballer, begins to show the first signs of Friedreich’s ataxia, and takes us through three generations into the future as we see the family struggling against and finally ‘beating’ the condition. The Gift actually begins in the year 2025 - as Mark Kaye (16) wants to find out why his parents engineered his genetic profile before he was born. Through his questions, the story of the family and their genetic history unfolds, by way of looking at
the choices each generation has had to make regarding their genetic heritage. Of course, The Gift is not only a play about one family’s struggle with Friedreich’s ataxia. It is about the hard dilemmas and difficult choices that genetics poses for us all. There are no right or wrong answers. Each of us must come to our own conclusions.

But there are three things expressed by the young people - Ryan, Annie and Mark - in the play that I’d like to underline….

Firstly, if genetics teaches us anything, it is - as Ryan learns - that we are all carriers of something, either good or bad. None of us is totally healthy or unhealthy. Our traditional view of healthcare as ‘healthy people looking after sick people’ is going to have to change towards individuals being more involved in guarding their own health. Remember that we’re all potentially at risk of having a child affected, since we may all carry recessive genetic disorders - all it needs is for us to be unlucky enough to start a family with someone else who carries the same recessive disorder. Ryan comes to believe - like Joseph Conrad, that ‘man
is amazing but he is not a masterpiece’, and that we owe it to society, to eradicate disorders and improve, wherever possible, our genetic heritage.

Secondly, however, this responsibility is only possible, if individuals have access to genetic and healthcare information. As Annie insists, in the play, ‘sometimes knowledge is a cure in itself’. Maybe the doctor-patient relationship needs to shift too, and take some of the burden of decision-making away from doctors and NHS fund-holders and into the public domain.

Thirdly, because, as Mark and Jennifer illustrate, it is essential that - as genetic research makes new kinds of treatment and intervention possible - there is opportunity to debate the issues publicly. We might feel - as Anne Waldschmidt of the German Green Party, herself disabled from birth by a rare genetic disease, does - that ‘Medicine reflects our culture, and in a high technology society we have become concerned with perfection.

As we strive for this perfection we seem to be less and less tolerant of imperfection. We are never going to wipe out birth defects, and technology is changing the face of pregnancy.

Health can become a totalitarian concept’. She feels, like Jennifer in the play, that things have gone too far already. We will all have different opinions - what we need is to hear and participate in the arguments before decisions are made on our behalf.

One thing is certain. As research continues, genetics is set to become one of the key issues for the next century. It has the potential to change how we define health and sickness, how we organise our healthcare and education systems. It will have implications for data protection and government. It will affect each and every one of us.

Nicola Baldwin