To Know or Not to Know?

Alzheimer's disease, when the lights go out to the point that you don't recognize your own family, is one of the cruelest afflictions, as much for the once-loved ones as for the oblivious victims. There is no cure, and little treatment beyond a bottomless well of patience. But what if, as a healthy young person, you were told for certain that Alzheimer's was going to strike you down in your 40s or 50s? Would that foreknowledge be insufferable?

Not according to José Luis Molinuevo, who this month delivered just that information to some 20 people. If they are not killed by accident or some other disease, these individuals are predetermined to get early-onset Alzheimer's. Molinuevo, a soft-spoken neurologist who looks younger than his 32 years, runs an Alzheimer's diagnosis and counseling program at Clinic de Barcelona, one of the country's leading research hospitals. The other members of the team include a geneticist, a psychologist and a psychiatrist.

There are about 400,000 Alzheimer's sufferers in Spain, the same proportion as in the rest of the world: roughly 1% of the general population. Those who can now be told that they will contract the disease relatively early in their lives belong to a small part of this total: about 5%. They have genetic alterations — in chromosomes 21, 14 and 1 — directly linked to Alzheimer's. These mutations account for approximately 50% of all inherited early-onset Alzheimer's. If a family has two living Alzheimer's victims who developed the disease before the age of 60, the Barcelona team will test the afflicted members to see if there is a genetic factor. If so — after a long process of interviews and counseling — they can check to see which members of the family have inherited the mutations. The chances are roughly 50-50.

The program started last October, the idea of senior neurologist Dr. Rafael Blesa, who persuaded several Spanish companies to fund it to the tune j750,000 over three years. "Science was overtaking the treatment of people," says Blesa. "The information genetic research was giving us you cannot just dump on a person, which is why we needed a psychologist on the team to see if people were up to handling it, and a psychiatrist in case they needed help later; the holistic approach." Since he launched the program, about 150 people have approached the hospital. Molinuevo says most are sent away happy — they don't even need to be tested because family history shows that their afflicted relative has the more common "sporadic" Alzheimer's, which can't be attributed to a genetic glitch.

The Barcelona team — believed to be the only one of its kind in Europe — has caused controversy in Spain. Might a healthy young person given the sentence of Alzheimer's commit suicide? What if an employer or an insurance company got hold of the information that a person was certain to succumb in mid-life?

Molinuevo says the program is super-cautious when it comes to ethics. One indication is that he will say very little concerning the "about 20" people — ages ranging from 20 to 45 — who have now received the news that they are genetically predisposed to the disease. Another is his refusal even to put to these people a request to see if they would like to talk, anonymously, about how they are to live with this burden. He will say that so far only one person has not been told, on the ground that he or she is not psychologically prepared for the news. The information he and his colleagues hold is stored separately from the rest of the hospital's records.