Cristina Odone worries about genetic ID cards

What will it be like to know from your teens that you face a terrible fate?

My friend "Sam" has been married for more than 20 years. Over the past few of these, without seemingly any provocation, his wife started to yell abuse at him. Then she took to talking to herself as she wandered round the house in a nightie. Finally, she adopted baby-speak and would sit staring blankly at the telly for hours on end. Sam was beside himself - and the doctor's diagnosis confirmed his worst fears: Huntingdon's disease, a degenerative brain disease that leads to premature senility and often death.

Sam and his wife have a son and a daughter. They stand a 50-50 chance of carrying the same disease in their genes. The three - Sam and the children - now face a horrendous choice: do the children take the simple genetic test that will tell them their fates?

Within 20 years, the choice won't be theirs. According to a Nobel Prize-winning geneticist, all newborn babies will be issued with genetic identity cards. Sir Paul Nurse told a science conference the other day that soon our ID cards will bear a genetic passport spelling out our future health.

Diabetes, heart disease, MS - these conditions, and more, will be revealed in a pocket-sized document to which everyone will have easy access. Everyone includes insurers, employers, potential partners, competitors.

For the candidate running against you in the election or the man who's been toying with proposing to you, the genetic ID card will provide an excellent means of dealing with you. Knowing your defective gene means he or she can discard you, ban you, expose you. Cruel? Certainly. Society will thereafter be divided into "healthy us" and "unhealthy them". Imagine being one of "them" - you'll be dogged by the fear of being found out, excluded, branded.

Should we allow for this kind of scapegoating? What kind of information are we entitled to have about our neighbour, our staff, our client? These questions need answering before Sir Paul's prediction comes true. Equally, we need to establish some form of regulation for genetic screenings.

Otherwise, I worry about youngsters such as Sam's, who will know, in their teens, that they face a terrible fate - even death.

This article first appeared in America is no longer invincible

2003-03-10