By Alex Jenkins
This week Angelina Jolie made headlines after she penned a New York Times article discussing her decision to undergo a pre-emptive double mastectomy. Jolie’s mother was diagnosed with breast cancer at age 46 and died a decade later. Jolie had also tested positive for the BRCA1 gene, a result that, when combined with her family history, meant that she had an 87% of developing breast cancer if she lived to old age. By having the mastectomy, she reduced that likelihood from 87% to 5%. In Jolie’s case, getting screened for the BRCA1 gene was a rational choice (although not necessarily the only rational choice), because she knew she would have recourse in the event of a positive result. But what about those diseases that are incurable and unpreventable? In that case, the decision to get tested is much more complicated.
There are some obvious benefits to knowing ones fate in this way. For one thing, if the person is planning on having children in the future, this knowledge could be used to prevent passing the defective genes on to their kids, either by using in vitro fertilization or by adopting. For those who already have children, the knowledge of ones impending death would allow them to plan and to put things in place to ensure that their children will be taken care of. But the drawback, of course, is knowing that you’re going to die. Soon. For some people, myself included, this would be a torturous burden to bear. In fact, this is one of the less-frequently invoked (yet very sound) arguments against the death penalty. Telling someone how and when they are going to dies can be seen as a form of psychic torture. For this reason, death row inmates in Japan aren’t told their execution date until the morning of the execution. At first glance, this seems just as bad, if not worse than knowing the date months, and possibly years, in advance. But at the same time, one can see the logic in reducing the length of time the prisoners must spend with the ominous fact of their execution date looming over them.
The fact is we all know we’re going to die. But for the vast majority of people, our knowledge of this fact is very abstract. Until we are confronted with explicit reminders of our mortality (such as a diagnosis of an incurable disease), our own death isn’t something that we’re fully conscious of. In his 2004 book The End of Faith, Sam Harris laid out an interesting thought experiment. The passage reads as follows.
IMAGINE that you have gone to your doctor for a routine checkup, and he gives you terrible news: you have contracted a virus that kills 100 percent of those it infects. The virus mutates so often that its course is totally unpredictable. It can lie dormant for many years, even decades, or it can kill you outright in an hour. It can lead to heart attack, stroke, myriad forms of cancer, dementia, even suicide; in fact, there seems to be no constraints upon what its terminal stages might be. As for strategies of avoidance—diet and health regimes, sequestration to one’s bed—nothing avails. You can be certain that even if you live with no other purpose than to keep the progress of this virus in check, you will die, for there is no cure for it in sight, and the corruption of your body has already begun.
Surely, most people would consider this report to be terrible news indeed—but would it be news, in fact? Isn’t the inevitability of death just such a prognosis? Doesn’t life itself have all the properties of our hypothetical virus? (pp 36-37)
Harris uses this example to illuminate the horror that knowledge of our mortality engenders in each of us. As he points out in a later quote, it’s not only the termination of life that concerns us (although that’s also a big concern), but also the fact that the finite nature of our presence is a reminder of our “creaturely insignificance” as he puts it. In light of Harris’ hypothetical virus, screening for genetic diseases seems only to up the ante, while the potential payout is still the same in the end.