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In a few years you will be able to order a transcript of your entire genetic code for less than $1,000. Adults cannot do much to alter their biological lot, but what if parents could examine their unborn child's genome? Without proper guidance, they might decide to take drastic measures—even to end the pregnancy—based on a misguided reading of the genetic tea leaves.
Two different university laboratories have developed tests that will reveal the entirety of a fetus's genetic code using just a blood sample from the mother (or that sample plus a drop of saliva from the father). Prenatal whole-genome sequencing will provide volumes of information beyond the currently available tests for genetic disorders such as Down's syndrome or Tay-Sachs disease—assays that parents now use to decide how to respond to a pregnancy. The three billion units of code furnished in the new tests will also dwarf the relative trickle of information provided by consumer gene-testing services such as 23andMe, which currently look (postnatally) only at perhaps about one million locations in the genome.
Any woman who undergoes such a test will quickly learn that there is no such thing as a perfect baby. Parents will encounter hundreds and, as the science progresses, thousands of instances in which a particular variant of a gene may statistically suggest (but not guarantee) their child's future. Will the child-to-be one day suffer from melanoma or diabetes? What about obsessive-compulsive disorder? Moreover, clues will emerge in whole-genome scans about not only health prospects but personality as well—whether she is likely to become an introvert or be able to carry a tune or star in high school sports. Whole-genome scans will tell parents a story about a particular future for their child—a future that those parents may not be rooting for.
A compelling example of the angst-provoking uncertainties involved has been raised by bioethicist and Scientific American advisory board member Arthur Caplan. What if a test picks up the gene for albinism? Being an albino is not a disabling medical condition, but it can be a social burden. Might that be enough for some parents to consider ending the pregnancy?
Attitudes toward child rearing might also change, as parents wonder whether their kid is just being bad or whether that tantrum is an example of a dysfunctional serotonin transporter gene. Without careful planning, moreover, the new prenatal genetics might rob a child of the freedom to make decisions best left until adulthood—whether or not to learn, for instance, if a mutation predicts the inevitability of Huntington's disease 20 years hence.
A customer of 23andMe can receive information via the Internet about a multifold greater risk of breast cancer or Alzheimer's disease without conferring with a genetics counselor. A similar laissez-faire approach to prenatal whole-genome testing, which might involve the decision to abort a pregnancy based on a personal and possibly inaccurate interpretation of dense and confusing genetic data, could portend tragedy.
Ultimately the U.S. Food and Drug Administration, genome-testing companies and professional societies such as the American Society of Human Genetics will need to develop a comprehensive policy on prenatal whole-genome testing. One option is to require that parents receive a filtered set of information from a genetics counselor. Bioethics scholars affiliated with the National Institutes of Health wrote an analysis last summer that calls on the medical community to develop a guide to the most relevant genomic data for future parents (life-threatening disease risk obviously tops the list). The report also recommends safeguarding the future child's right not to be told about later-in-life disease risk until adulthood.
Unfortunately, there aren't nearly enough trained genetics counselors to handle the coming upsurge in demand for this type of information. And neither physicians nor other health professionals know enough about genomics and its relevance to serve as steady guides. Without access to a much higher level of refined expertise, the secrets of our offspring's genetic code will continue to remain an unnerving cipher—or worse.
This article was originally published with the title Beware the Destiny Test.
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16 Comments
Add CommentObsessive Compulsive Disorder. Really? I should think it more likely, and tragic, that parents will screen for the allusive "gay gene" and abort the fetus.
Reply | Report Abuse | Link to thisIt's a parents right to seek an abortion for any reason. You personally may not like it but that's the way it is so this is really not an ethical or moral question.
Reply | Report Abuse | Link to thisIf a pseudo-informed decision to kill an unborn baby is somehow "tragic", then what is killing the fetus just because the pregnancy is an inconvenience or "unwanted" for other reasons? dbtinc - just what is ethical or moral then? Your declaration on parents' rights has the clarity of Hitler's vision on eugenics without the nasty appearance of wrong-doing by killing the babies after they are born.
Reply | Report Abuse | Link to thisHmm, this is a troubling article. It seems to take the position that parents aren't equipped or qualified to handle all the information that fetal genetic tests will provide for them, and as a result will make all sorts of "bad decisions".
Reply | Report Abuse | Link to thisIt seems to me that the potential to make "good decisions" as a result of having this information far outweighs the bad: Protecting children that are predisposed to certain disorders from environmental factors that would activate or exacerbate them is one big one.
Also the notion that somehow withholding some information can improve this situation or that genetic counselors can steer parents in the right direction seems a little condescending. Like it or not parents are the primary determinate of their young children's welfare and guidance, and I think on balance are probably the best equipped to deal with this information.
Sure their will be parents who make bad decisions, but for the most part these are probably parents who would have been poor stewards of their children's welfare even without genetic information.
yes, most definitely tragic. but it's limited in that any baby is constrained by the parent's DNA, which will never produce the perfect baby, as the article notes. also, abortions aren't the kind of procedure anyone wants to have multiple times.
Reply | Report Abuse | Link to thisso while every life lost is tragic, I think this new fetal DNA testing regime has natural limitations that compel caution.
The SciAm Editors hint that parents should be protected from raw data by trained counselors and the FDA. This is an appalling lapse from a magazine that advocates citizen science.
Reply | Report Abuse | Link to thisKnowledge is not a drug.
DNA simply determines the structure of the new individual. Ethics, morality and other mental states that make the individual a human are a result of mothering and the culture the individual grows up in. DNA does not determine the resulting individual, only a flawed structure makes it impossible for some to develop.
Reply | Report Abuse | Link to thisIf the structure is flawed the individual will have difficulties; that is why it is wrong to allow genetically flawed individuals to procreate. Retarded & insane people who can not bring up their child, should be sterilised. As should most large company CEOs, you would not pay yourself 20 Million plus a year unless you were insane.
As far as patients are concerned, DNA tests will cut both ways; there will be those who will benefit from the genome screening, and others who will suffer from overdiagnosis and overtreatment. In any case, the pharmaceutical companies will make tons of $$$$$$$$$ selling the tests as well as the drugs targeting (with questionable effectiveness) a myriad of new conditions. It will be a gazillion-dollar market.
Reply | Report Abuse | Link to this"Knowledge is not a drug. "
Reply | Report Abuse | Link to thisTrue. But knowledge in the wrong hands can lead to tragic consequences.
The question is, whose hands are the "wrong ones", the parents' or the government's?
I would like all readers to remember, Einstein would have been aborted by many parents today and Hitler would still be born today. With all the forms of birth control, pregnancy should be the result of choice, making the need for abortion meritless. To abort a child because it does not fit a parents ideas is criminal in my view. To tailor make a child is also criminal in my view. Parents need to ask themselves; would I have been born if my parents knew then what we know now, how would I be different if my parents had the chance to tailor make me, will my children be happy or accept the way I tailor made them and the many other questions that children may ask. Not long ago I read where some blind people wanted in vitro fertilization to ensure their child was blind, what right do we have as parents to force a handicap upon unsuspecting children. Has the human ego gone so far as to say ‘My needs are more important than my future offspring”? Parents and those that went along with tailor making children may find themselves being sued by children asking; what or who gave you the right to make me suffer? Today we see children suing parents over what parents thought were the best decisions at the time; decisions driven by religious views or common practice or other variables, for example, circumcision. Many men believe it was a decision best left to the man, especially when the procedure was poorly done, which resulted in further medical treatment or a loss of sexual pleasure. What would a child left intentionally blind or deaf or with other disabilities tailor made by parents say to the parents or the medical people that went along with the parents. What would the economic, political and legal cost be for the parents, the nation, society and the world? Remember, Hitler want to create the perfect race as he defined it and he tried to eliminate anyone who did not fit his definition. Are parents the new Hitler’s of the world, god help us all.
Reply | Report Abuse | Link to thisWhat determines a good decision? We constantly find decisions made with the best available data today were the worse decision ten or twenty years later. Remember, Einstein would have been aborted by many parents today and Hitler would still be born today. Many decisions are driven by religious views or common practice or other variables, for example, circumcision. Many men believe it was a decision best left to the man, especially when the procedure was poorly done, which resulted in further medical treatment or a loss of sexual pleasure. A number of law suits have been filed and won over circumcision and other decisions parents made. Not long ago I read where some blind people wanted in vitro fertilization to ensure their child was blind, what right do we as parents have to force a handicap upon unsuspecting children. Has the human ego gone so far as to say ‘My needs are more important than my future offspring”? What would a child left intentionally blind or deaf or with other disabilities tailor made by parents say to the parents or the medical people that went along with the parents? What is the economic, political and legal cost be for the parents, the nation, society and the world? Remember, Hitler wanted to create the perfect race as he defined it and he tried to eliminate anyone who did not fit his definition. Are parents the new Hitler’s of the world?
Reply | Report Abuse | Link to thisYou are very correct. What determines a good decision? We constantly find decisions made with the best available data today were the worse decision ten or twenty years later. Remember, Einstein would have been aborted by many parents today and Hitler would still be born today. Many decisions are driven by religious views or common practice or other variables, for example, circumcision. Many men believe it was a decision best left to the man, especially when the procedure was poorly done, which resulted in further medical treatment or a loss of sexual pleasure. A number of law suits have been filed and won over circumcision and other decisions parents made. Not long ago I read where some blind people wanted in vitro fertilization to ensure their child was blind, what right do we as parents have to force a handicap upon unsuspecting children. Has the human ego gone so far as to say ‘My needs are more important than my future offspring”? What would a child left intentionally blind or deaf or with other disabilities tailor made by parents say to the parents or the medical people that went along with the parents. What would the economic, political and legal cost be for the parents, the nation, society and the world? Remember, Hitler want to create the perfect race as he defined it and he tried to eliminate anyone who did not fit his definition. Are parents the new Hitler’s of the world?
Reply | Report Abuse | Link to thisI will paraphrase the end of a review of the movie "Gattaca": You may say you would not take advantage of genetic testing but tell me this: are you willing to take the next random car off the assembly line if you desire a car?
Reply | Report Abuse | Link to thisAs parents, we are the protectors of our children, not the owners of our children. A child's genetic endowment belongs to the child, and not to the parent or to anyone else. It is simply unethical to unveil a person's genetic code before they have reached maturity and are able to consent to the disclosure.
Reply | Report Abuse | Link to thisThis is a relatively short term problem. Those who murder their children because they aren't perfect will tend to die childless. This will leave the more rational behind to continue procreating. The other upside to this is that we will begin to be able to correct the vast majority of prenatal diseases and as mentioned by a previous poster, avoid the triggers that activate unwanted genes.
Reply | Report Abuse | Link to thisThings may get even more interesting as technologies develop and costs decrease. For example a couple could have their genomes sequenced and make a list of traits they most want their children to inherit. They could conceive by in vitro fertilization and then sequence many embryo genomes prior to implantation to select the one that matches their wish list - a designer baby. Another possibility would be mating databases where you choose your mating partner based on their submitted genome sequence - maybe it could be called personal eugenics.
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