If you’ve been hiding under a rock, please see Baby Genome Sequencing for Sale in China:
A Boston-based DNA sequencing company is offering to decode the complete genomes of newborns in China, leading some to ask how much parents should know about their children’s genes at birth.
Veritas Genetics says the test, ordered by a doctor, will report back on 950 serious early- and later-life disease risks, 200 genes connected to drug reactions, and more than 100 physical traits a child is likely to have.
Called myBabyGenome, the service costs $1,500 and could help identify serious hidden problems in newborns, the company says.
Obviously a $1,500 price point is beyond most Chinese. But the total fertility rate in China today is 1.56, and almost certainly lower among urban elites who could actually afford this service. Considering that genome is with you for life, more or less, $1,500 isn’t really that much.
For years there have been many fly by night genetics companies who have some presence in East Asia. They come and go. The combination of a lax regulatory environment and the allure of “genes” means that there is some money to be made. Veritas in contrast is a serious company. This is heralding the reality that widespread sequencing is going to go primetime.
Of course there is skepticism. Fortunately the piece doesn’t talk much to people who express Leon Kass style FUD. The objections are scientific:
But some doctors say the plan is a huge overstep. “I think it’s vastly premature to peddle a completely unproven set of data, especially to a vulnerable population like neonates,” says Jim Evans, a professor of genetics at the University of North Carolina Chapel Hill.
The problem is that the risk posed by many disease genes remains uncertain. Even if a child has a mutation in a gene, he or she may never be affected, prompting debate among doctors about whether it’s useful to inform parents.
These are real points, but I don’t see why sequencing should not be allowed as a choice by parents nevertheless. And widespread adoption of sequencing would actually allow us to start obtaining more data that we could use to make better decisions in the future. The genomics space for a while has had a bit of a chicken & egg problem. The sequencing is starting to get there, but we still need to get phenotypes. And this seems like one way to get the public involved and feel like they have a stake.
Like in vitro fertilization I see neonatal sequencing as inevitable in regards to whether it will be ubiquitous. It will be common. And “ethical problems” won’t really come up in the future because people will be comfortable with it. Right now there’s a fear factor.
This is in sharp contrast with CRISPR. That’s a technology that will have real consequences, and like male circumcision may be difficult to reverse for someone who as an adult was modified in infancy. In contrast a genome sequence is just more information.
For years may people have speculated that genetic testing technology will really begin to take off in Asia because for various reasons Americans and Europeans are wary. To me this is a signal that that might be occurring, depending on how successful Veritas’ venture is.
This is perhaps the most important point:
But Veritas will not reveal everything, in recognition that not all the information in the genome is appropriate to give parents right away. For instance, it won’t tell them about a gene that can strongly predispose people to Alzheimer’s in old age.
Instead, Veritas says, it will retain the rest of a newborn’s genome data and let parents purchase further information at a later date.
I think this may be more common than we think. Most people don’t want to deal with a ~3 GB text file. That being said, I think they should in the future have an option for people to buy their data outright.
Addendum: I met Robert Green at SxSW. Nice fellow. One thing that he mentioned was widespread opposition among physicians. I suspect one dynamic that MDs won’t like in the near future is decentralization of the distribution of medical services away from their own profession. This is part of it.
Another great post. I was going to ask a question but after rereading the post was able to get the answer. Thanks. GNXP is an oasis on an otherwise mindless internet.
I opine on the side of parents knowing all about their children’s genes at birth. The principle I espouse is that an individual (or adult(s) responsible in the case of a minor) should be in possession of *all* of the personal information held on that individual by anyone. What is the defence for holding personal information on someone without that person knowing about it? I can’t think of one – at least, not one I would support.
But then I opine on the side of people needing to take primary personal responsibility for their own behaviour and well-being. To make fully informed decisions, they need to have full data, or as full as is available. Hand-wringing about adverse psychological impacts on people if they are informed they carry unfavourable genes is heavily overdone IMO, in some of the opinions I have seen expressed by, inter alia, bioethicists. In fact, about the only bioethicist I have any time for, that I have read/listened to, is Alice Dreger – I don’t necessarily agree with everything she says, but at least she strikes me as intelligent, grounded, rational, logical and decisive; and to be admired as far as personal courage and conviction are concerned.
In the jurisdiction I live in, which some people have tried to persuade me is an autocracy/authoritarian state that does not respect my personal freedom (in their imaginations – this is manifestly incorrect in practice as experienced by me at ground level), the law states that I have full legal right of access to *all* personal data being held by anyone on me, including data held by government and legal authorities.
I’m all for it, but I do have a concern.
In a few hospitals in China, up until recently, female infants and toddlers could be checked in for a “cold” to which they’d unfortunately succumb. The attending physician would then receive a large gift from the relatives for his efforts.
The relaxation of the one-child policy and better healthcare provider monitoring by provinces has curtailed this. However, I wonder if children who’s genes are considered less than optional by some status conscious parents, might start catching terminal colds too.
However, I wonder if children who’s genes are considered less than optional by some status conscious parents, might start catching terminal colds too.
horrible. OTOH, this is an argument for preimplantation genetic diagnosis.
jason – female infanticide is nothing new in Homo sapiens (or infanticide generally), and certainly not confined to China; e.g. even more prevalent in some parts of northern India. Maybe you see this as yet another opportunity to hand-wring about human rights abuses in China and/or engage in the China bashing that all of the Western main stream media have been engaging in, but it’s actually remote from the subject. There is no link. You have zero evidence to suggest what you are suggesting will happen, and no reason to think it will be more likely to happen in China than anywhere else.
I think what Razib is suggesting is far more likely, and that not confined to China either, but endless bioethical arguments about it hedged around with loony fuzzy religious beliefs and oppressive regulation will hinder its development in the Western world that just won’t happen in China.
BTW, infants and toddlers are among the high risk groups for fatalities from influenza, and it is not uncommon for them to be hospitalised with it and not come out alive. Genuine cases. And southern China is often ground zero for new influenza strains to which there is little resistance.
In the more distant future, I suspect most of humanity to have access to enough information to have a sort of crude gamelike “character creator” style dials to choose from when it comes to genes. I guess it can’t be entirely exact because of environmental interactions, but they might still be able to showcase general ranges of phenotypes based on the types of genotypic combinations we’ll know more about later on.
Awhile back I remember a comical article about the future of humanity from Oliver Curry:
http://news.bbc.co.uk/2/hi/6057734.stm
In his estimation there would be a split, presumably between the people who chose to enhance over time, and those that did not.
The enhanced: The descendants of the genetic upper class would be tall, slim, healthy, attractive, intelligent, and creative
The non enhanced: The “underclass” humans who would have evolved into dim-witted, ugly, squat goblin-like creatures.
hyperbolic? probably, but kind of hilarious
I was going to comment ‘Shades of HG Wells’, but then I read the article by Curry and saw that was what he was referring to.
@John Massey“jason – female infanticide is nothing new in Homo sapiens (or infanticide generally)”
So what. Neither is cannibalism, slavery and cheating on your wife.
“and certainly not confined to China”
I never said it was, I was using a Chinese example because the linked story was about China.
“You have zero evidence to suggest what you are suggesting will happen”
It’s frequently happens already because some babies didn’t have a Y chromosome, why do you believe it wouldn’t happen for other perceived glitches in their genes?
“and no reason to think it will be more likely to happen in China than anywhere else.”
Again, I was used a Chinese example because the linked story was about China. I never said anything about it being more likely to happen in China. Why is this so hard for you to understand?
“endless bioethical arguments about it hedged around with loony fuzzy religious beliefs and oppressive regulation will hinder its development in the Western world that just won’t happen in China.”
I prefaced my comments by saying “I’m all for it”, but you completely ignored that. Why?
As with any new technology there are always ethical questions and possible dangers to be considered. It was like that with radiology, electricity and nuclear power. That doesn’t mean the technology should be hampered, at all. However an eye should be out for potential abuses, it’s only prudent.
BTW, infants and toddlers are among the high risk groups for fatalities from influenza, and it is not uncommon for them to be hospitalised with it and not come out alive. Genuine cases. And southern China is often ground zero for new influenza strains to which there is little resistance
Nice try at whitewashing but this actually happens. Several doctors have been executed in fairly high-profile cases involving hundreds of children. A cursory google search will give you dozens of reliable news stories. There’s even a couple on People’s Daily.
@jason – I commented because you created a fictitious concern: “However, I wonder if children who’s genes are considered less than optional by some status conscious parents, might start catching terminal colds too.” No doubt yet another “Chinese example”, naturally; just your own fictional one. That should be “whose”, by the way, and “optimal” rather than “optional”.
Child deaths from influenza happen.
Do you have concerns about using PGD to select for cognitive ability? Or do you think this, too, will be normalized within a few decades (years?) once it starts? It seems to me that this could have some real ethical implications, although perhaps I’m part of the FUD crowd. (Didn’t now FUD was a thing. It’s remarkably felicitous.)