Balancing personal and collective rights has never been easy, and it's about to get a lot harder. Up till now we've struggled with the limits of free speech against hate/slanderous/rebellious speech. Religious freedom vs freedom from religion. Privacy vs sharing information to plan social spending. It goes on and on.
Recently we cracked the human genome, though we're still working on actually understanding exactly how much of a role genes have in determining what diseases we will get, our lifespan, our intelligence, and even our behaviours. Costs for sequencing a genome are falling at a rate that makes Moore's Law look like a slowpoke. Even now, anybody that really wants it can get their DNA sequenced. There are some useful things they can learn from this. Soon, I suspect every newborn will have their DNA sequenced at birth. (Child support laws will never be the same.)
We already suspect that we might be able to prevent the onset of some diseases, and may be able to mitigate or delay the effects of others, and we'll only get better at it. We will be able to better match tissue sample for organ transplants, and we are on the verge of growing new organs on demand. It may be that a full understanding of our genetic code may dramatically increase our lifespan.
However, there is a downside. Lets look at alcoholism for example. There is much research trying to determine of much our genetic heritage contributes to alcoholism, how it contributes to the vulnerability of of our organs to alcoholism, and how much is learned behaviour from our parents or other adults. So far, research indicates there is no one "alcoholic gene", but rather a complex mix of genetic factors that appear to be contributing to the disease.
Let's imagine for a moment that researchers figure it out, and come to understand that a particular genetic make up contributes in a certain way to a person becoming an alcoholic. Maybe not with certainty, but a strong understanding. Now what do we do with that information? From sequencing a newborn's genome we find out that they have this genetic vulnerability. Do we tell them or their parents? I would assume so, but then how much control do we put on that kid when they become a teenager and want to start drinking, just like their buddies?
One alcoholic told me he became an alcoholic the afternoon he took his first drink. One drink. He couldn't stop. If someone knew they had say, a 75% chance of becoming an alcoholic on that first drink, based on a genetic test, would they take that drink? (Yeah, I know. Teenagers. Duh.) Given the consequences of alcoholism to themselves and their families, to say nothing of the innocent people in the oncoming car, do we have the right to stop them from taking that first drink? And if so, how?
Now that you've digested that, lets go onto a hard one. Lets assume that the cost of sequencing DNA becomes so cheap that it's a routine test as part of an annual physical. You and your sweetie want to get married and have children. Some research tech somewhere takes a look at both your DNA structures, and starts testing for genetic defects in the combinations of your DNA. (It's only computer time, after all, and if we don't set computers to tasks like this they start thinking about taking over the world.) Then they find that your children will almost certainly have a genetic disorder. Maybe it's something trivial, like colour blindness. Or maybe it's something much more serious, like Hemophilia, or Sickle-Cell disease. Maybe it's something quickly fatal, like Tay-Sachs disease.
Where do you draw the line? Is a 25% chance of your child having Tay-Sachs enough to prevent you from having children altogether? Should society prevent you? Is a 50% chance that they will carry the genes to potentially pass to your grandchildren enough? Who decides? Does it matter if the family is wealthy and lives in the USA where you can have all the health care you can pay for? Does it matter if the family lives in a socialized medical system where we all share the costs? Does that give the rest of us a say in what genetic conditions are brought into the world?
Suppose we find the medical techniques to prevent or cure Tay-Sachs, is it then right to cure all those with the condition? A few years ago I would have said yes, without question, but then I discovered Deaf Culture, and the debate about Cochlear Implants. I was astonished to learn that some parents of deaf children saw that implant as an assault on their culture, and did not allow the operation. It taught me that things are more complicated than we think.
That hypothetical cure for Tay-Sachs, what if that knowledge also enabled us to "cure" other genetic "disorders". Who gets to define which genetic issues are "disorders" and get treated. Suppose that that person or committee has a thing for blue eyes, and decides that everyone should have blue eyes? Or that red hair is the mark of Satan? Or that everybody should be 1.75 m tall, plus or minus a few cm?
Who would have thought that sound waves would have led to a huge population imbalance? I'm talking about ultrasound. A medical technique designed for any number of legitimate purposes is now often used to determine gender. In some parts of the world that leads to daughters being aborted. I can't imagine what they think they are doing; if everybody is wanting sons, who are those boys going to marry and how will you have grandchildren? If we knew this would happen, should we have restricted the medical technology to places where it would be used for a benign purposes? Alas, that genie is out of the bottle.
What will it do for human society if we can fairly easily learn that having children with one particular partner leads to them having a shorter lifespan than having them with a different partner? What happens when the insurance companies get their money mongering paws on your genetic information, and know more about what diseases you'll get than you do? What if part of getting life insurance involves submitting a genetic sample? What happens to the whole concept of medical insurance?
Many people think that having more information is better than having less. Maybe so, in some cases, but until we learn how to evaluate that flood of information, it's a mixed blessing at best. A little while ago I listened to a breast cancer specialist talking about preventing breast cancer. For years they thought that better images was the solution. Then they realized that better images gave them more information than they could cope with. Those two tumors that are almost, but not quite identical have very different pathologies, but it takes an expert to determine which is which. And there are all the new things the image finds, someone has to determine if those tiny irregularities are cancerous or what. With more detail it takes longer to make an assessment. Meanwhile, some poor woman who felt a lump is walking around wondering when they will call her with the results. Very recently, medical associations have announced that at least some of the screening that is happening now shouldn't be done anymore, and the screaming about this has only begun.
Our growth in knowledge is outstripping our ability to cope with it. Any doctor working full time, and they count themselves lucky if that's all they work, simply cannot keep up with advances in their field. Yet someone with Multiple Sclerosis goes to see them and wants that surgery they heard about. Odds are the doctor may have heard of Dr. Zamboni, since he's been in the news, but probably doesn't know the details. Multiply that by the advances in the research on innumerable diseases and conditions.
It's certainly clear to me that our medical system cannot go on the way it is now. I've no real idea what it needs to look like, but one thing I do know for certain. Hang onto your hats, it's going to be a wild ride. I hope within my lifetime to read the headline, "Everything we know about medicine is wrong."
Would you get your DNA sequenced, why, and what would you do with that knowledge?