A PERFECT LIFE

Jane Weiss, a research scientist at MIT, investigates the genetic makeup of a neurodegenerative disease, a quest made more urgent because her mother died of the disease and Jane herself has a 50 percent chance of having it.

Both Jane and her sister, Laurel, have developed strategies to deal with the possibility that Valentine disease (in many ways similar to Huntington’s) might be in their future. Laurel lives for the moment—she is completely uninterested in making plans, and she lives life on the edge, taking risks and spending profligately. Jane, by contrast, lives the life of a dedicated, even obsessed, scientist, bent on discovering the genetic mystery of the disease that killed her mother. Jane’s father, Herb, is president of the Institute for Valentine’s Research, a philanthropy he founded as his wife was dying, and he’s getting ready to marry Honey Land, chairwoman of the Valentine’s Disease Society, whose husband also died of the disease…and here the medical issues thicken, for when Jane meets Willie, Honey’s son, they begin to fall in love, a potential disaster from a genetics point of view, for any children they have would have a 75 percent chance of carrying the Valentine’s gene. Jane eventually and dramatically finds a marker on the gene for Valentine’s, giving rise to personal and ethical dilemmas—should she take the blood test she developed to see if she will get the disease? Should Willie? Should Laurel? What knowledge should we have, what knowledge do we really want, and how should that knowledge shape the choices we make in our lives?

Pollack expertly and sensitively focuses on the nuances of ambivalence and on the human dilemma of what to do in the complex ethical situations that arise from genetic research.