Imagine that you carry BRCA-1, called the ‘breast cancer gene’. Because it’s in your family, you have seen many of your relatives hit by cancer. Should you have a daughter, she has a 50% chance of inheriting the gene, putting her at very high risk of contracting breast cancer in her lifetime. But you want to have children. What do you do? Do you decide to adopt? Do you play the odds and have kids the old-fashioned way? Or do you turn to science?
In England some families have turned to preimplantation genetic diagnosis (PGD). It’s basically a twist on IVF, where embryos are screened for genetic markers like BRCA-1 before implantation. And the first baby screened for BRCA-1, a little girl, was born in London this month. By all accounts she is healthy and doing well, and does not carry BRCA-1.
I was surprised to learn that PGD is not a new practice. In fact, it’s been used for over a decade to screen for cystic fibrosis. In the UK the Human Fertilisation and Embryology Authority changed the rules in 2006. Prior to that time, screening could only be conducted to rule out actual diseases. Now, tests are allowed for ‘susceptibility genes’, such as BRCA-1, which increase the chances someone will become ill, but not guarantee it.
It’s a big question, screening embryos. We can all understand why someone would want to spare their child the pain of a debilitating and life-threatening disease. On the other hand, there’s nothing to say that this technology couldn’t be used to select other traits – gender, for instance. At the moment it’s tightly regulated, not to mention the high barrier imposed by a technology like IVF. But there is always the question of where this could lead.
I’ve been thinking about it a lot. I had my kids the old-fashioned way, not being aware of any genetic issues in our families. Would I feel differently, would I have paused before I had kids, if I knew that something might happen down the line? I’m not sure. But then, I haven’t watched my mother, my aunt, my grandmother, my cousin, my sister, or actually anyone suffer with cancer. Something like that could absolutely change my perspective.
Then I think of couples today who effectively select the gender of their babies. I am aware of clinics that offer early gender screening to parents. And I know that the vast majority of babies adopted from China are girls, because of parents’ strong desire for a son coupled with the one child policy. It’s not wrong to want a boy or a girl, of course, but going to great lengths to ensure that you don’t have a daughter is more than a little problematic. So I know that good and bad can come from anything.
I wonder where this technology will lead us. I suppose that my real hope is that completely apart from PGD we develop better treatments and prevention for diseases like breast cancer. Because my kids may not have BRCA-1 (that I know of), but that hardly means they won’t be touched by cancer. And I want the best for my little ones, just as I believe the families who choose PGD want the best for theirs.
Oh, and welcome to the world, baby girl! I hope that you face much less controversy over the course of your life than you have faced in the beginning. 
It’s all a little scarey to me. I like the old fashioned way…and humans are designed to go through trials and tribulations….making sure your child won’t carry that gene…won’t stop them from having any other disease or suffer some horrible accident down the road. Life has a bigger plan for us than we can imagine, and most times, life is out of our control.
My mother had breast cancer when she was 35, before the testing was done. I have been meaning to do it, but I have been waiting for the Patients’ Bill of Rights goes into effect so my insurance company doesn’t punish me down the line in the case that I develop bc.
So, I would totally do this if I could. I’ve seen bc up close and personal.
We’ve taken the first step down a slippery slope, whether we meant to or not. Sure, people can be genetically pre-screened for all sorts of things and the way science and technology is evolving it’s just a matter of time before a gene or trait that is identified as being detrimental to our well being can be easily and inexpensively modified.
And then what if we decide we don’t want our baby to have blue eyes. Can we change it? It’s inevitable that the technology to detect potentially life threatening illnesses will be redirected to something much less important like choosing physical characteristics in the name of vanity….we’re only human, after all.
Personally, I don’t want to be looking at an ultrasound of my unborn child, glancing at lab results and having to decide if I should welcome them into the world or call the whole thing off just because something within them might not be perfect. I’m fairly certain I’m full of all sorts of genetic flaws, mutations and who knows what else. There is also a history of heart disease and cancer in my family, so there’s a chance my girls’ might have some of those genes, but there’s also a good chance they won’t. Time will tell.
The idea of genetically prescreening fetuses doesn’t appeal to me. When my girls grow up and someone tells them they have a wacky sense of humor I want each of them to be able to shake their heads say, “I know, I get it from my dad but we weren’t pre-screen so there was nothing my mom could do”