Is it Ethical to Genetically Sequence Kids if There’s No Immediate Health Concern?

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genetic family testing
Meet the Wests, first family of recreational whole genome sequencing.

John West is very familiar with whole genome sequencing (WGS). He was a general manager with Illumina after they acquired Solexa, where he had been CEO. So it’s no surprise that John West hired Illumina to sequence him, or even that his wife Judy followed suit. What has caught attention is that he asked his daughter Anne (17), and his son Paul (14) to be sequenced as well and they agreed. This marks the first time that an entire family has publicly undergone WGS without any pressing reason to do so (such as researching a genetic disease). While some may view this as “recreational sequencing” I think that John West is simply ahead of the game. Could the West kids learn something unpleasant about their genes? Sure, but knowing your genome is going to pay big dividends in the years to come. Ethical concerns about having children sequenced are understandable now, but in the future it may be considered unethical not to sequence your children as early as possible.

According to the Times Online, West paid something close to Illumina’s retail price for the sequencing service, that’s nearly $50k a piece or $200k all together. There are relatively few people able or willing to pay that much to peer into the DNA of their families. Complete Genomics, who we see as Illumina’s chief rival, is on the road to providing WGS at a much cheaper rate –$10k or less. Both companies are aiming to hit a $1000 price tag as soon as possible. What few could do at $200k, many will be able to afford at $4k and so, from an economic perspective at least, it seems very likely that we’ll be able to sequence our families soon.

Will we want to? Understanding one’s DNA is the key to benefiting from the growing body of research about genetics. Genetic testing can give you early warnings about devastating illnesses like Parkinson’s, diabetes, and heart disease. We may also need WGS if we are ever to take advantage of certain forms of gene therapy. Those are good reasons for every individual to get sequenced, but there are benefits for families sequencing together as well. As West points out in the Illumina press release, sequencing an entire family lets you explore the importance of variations in the same gene on opposing chromosome copies (compound heterozygote), and may provide insight into medical conditions.

For now, the possible benefits from genetic testing are relatively small, but they are likely to grow with every year. Is the same true for risks of genetic testing as well? Let me be clear here, there is no physical risk to being sequenced – DNA is simply extracted from a saliva or blood sample. The ‘risk’ is how the information provided by WGS could affect one’s life. If you had a large disposition to Alzheimer’s would you want to know? Would learning about it depress you irrevocably? In that case, maybe ignorance would be bliss.

Nonsense.

I’m not a big fan of ignorance, and I can’t see it getting any more appealing in the years ahead. Yes, there is always an emotional weight to learning about a medical condition. That knowledge, however, can often be put to good use, helping us seek treatment that is needed. Even if you have a genetic disposition to a disease with no known cure or associated therapy, wouldn’t you at least want to know that before you start having children?

It all comes back to the kids. When Anne and Paul West agreed to be sequenced, they set an interesting precedent: non-adults consenting to genetic testing. They had, a few years earlier, agreed to a more basic SNP test from 23andMe. More qualified ethicists than I can debate whether a non-adult has to (or even can) consent to a medical procedure. What interests me is whether or not there is any downside to knowing your DNA. There is a concern that once someone’s DNA is on file insurance companies, employers, and potential mates would all rifle through that data looking for reasons to treat you poorly. Who knows, maybe they would, but I doubt we will let it get to that point. All around the world nations are taking steps to outlaw genetic discrimination (including GINA in the US). We won’t have to viciously protect our DNA from being searched, and even if we wanted to, we probably wouldn’t be able. $1000 WGS will eventually get even cheaper (years down the line) and DNA is easy to come by. Unless you’re going to guard your precious bodily fluids every second of every day, someone would eventually be able to spy on your genes.

In other words, I don’t think there was much legal/social risk to what Anne and Paul agreed to, and any risk they did expose themselves to the rest of us will soon be exposed to anyway as well. And for the record, while at least one of the West parents submitted their genome to the NCBI database neither of the children’s DNA was made public at this time. They’ll be able to make that decision for themselves when they turn 21.

So if you’re like John West or I, you probably see WGS for the family as a net-positive. Good chance for improving your own medical care, little risk of being ostracized from society for being a genetic leper. If more people take that view it’s likely that the age at which we will want to genetically test our children is going to get lower. Already there are preconception and prenatal genetic tests to help parents decide to have (or prepare for) children with a chance for genetic illness. Such testing effectively helped eradicate Tay-Sachs from the Jewish community. When it costs less than $1000 to sequence someone, it seems very likely that many parents will opt for the test immediately after (or perhaps even before) birth.

That could lead to unprecedented healthcare opportunities. Right now, our understanding of how DNA relates to disease susceptibilities is based on handfuls of SNPs and small groups of genes. This understanding will seem primitive in a decade. There is so much to learn, so many interactions between genes to trace, so many medical histories to explore and tie in with genetics. We are going to know a lot more in the years ahead and taking advantage of what we know is going to necessitate sequencing at some level. Why not get your child’s WGS done as soon as possible so that you can maximize the possible benefits?

Instead of asking if it is ethical to genetically test children, let’s imagine a time when not testing a child could be seen as a health risk. There are many illnesses in childhood which may have a strong genetic component (various cancers, diabetes, etc). Many of these diseases can be treated better with advanced warning. If you were a parent, wouldn’t you want that warning? If everyone got their children tested for these diseases, it may eventually seem negligent if your child wasn’t sequenced. I think we will be entering such a time sooner than we think. In that case, John and Judy West’s decision to get their children sequenced (and their children’s consent to the WGS) isn’t ethically questionable, it’s demonstrating laudable foresight.

For those wishing to read more about the ethical concerns surrounding the West family’s sequencing adventures I recommend Marc Henderson’s article in the Times Online. Genetic Future author Daniel MacArthur’s analysis of that article is also great reading. In the end, I think the debate centers as much on the fear of changing humanity as anything else. Genetic screening before conception is not such a long jump from making designer babies, and we recoil from the idea of breeding humans the way we breed livestock. Still, parents may reconsider their prejudices against such concepts when they are presented with the ability to help their children be smarter, healthier, and happier. Even if we completely outlaw all genetic selection for embryos, WGS will still be a valuable tool for understanding and dealing with the genes we receive naturally. DNA is data, and sequencing gives us access to that information. It’s hard to argue against knowledge and those that do rarely have the final say in how technology develops.

[image credit: College Hill Life Sciences]
[source: Illumina Press Release, Times Online, Genetic Future]