Testing your family's genetic makeup is about to get a whole lot easier.
Genetic testing, like most technologies leading up to the singularity, has its pros and cons. Would-be parents can feel better knowing they don’t have to pass on life-threatening conditions to their offspring; they might be carriers, but that doesn’t mean their children have to be. For instance, the neurological disorder Tay-Sachs has virtually disappeared because of carrier screening. The foray into this new era of information sharing is bound to effect our lives, but how? A loss of privacy could lead to unjust discrimination. The time of genetic selection using low cost solutions is at hand. But reading genes isn’t exactly like testing for high blood pressure. We should fully understand both the benefits and the consequences of sharing this kind of information before genetic testing is packaged and fed to the masses. Want to know how personal genomics is similar to Web 2.0? Check out the video below.
Shaping one’s own destiny is part of the human equation. When former CEO of Solexa John West ordered whole genome sequencing for his entire family, the industry took notice. By participating, not only could each family member better provide for his or her own health care, but identical genes on opposing chromosomes could be studied in greater detail. For both scientific research and family wellbeing it was a win-win situation. Linda Avey, co-founder of the genetic testing company 23andMe who had her three children genotyped, found that her fraternal twins are identical in the region of the genome where the immune system is inherited; this information would be useful should one of the twins require an organ transplant. Situations like these clearly demonstrate the benefits of gene testing, and soon the service will be available to everyone.
A new market is emerging to make genetic information available to the public. At an average of a few thousand dollars, genetic testing services are now affordable for many families, and the cost is dropping. The genetics testing company Counsyl offers a $350 universal genetic test that looks for genetic diseases using saliva samples. Women are routinely tested as a part of prenatal care, and a good number are stopping their pregnancies if a disease is discovered. One U.S. startup even wants to offer the service for $30 per sequence. But while we can’t yet roll back the price for genetic testing with any assurance, screening for rare and fatal conditions is at present commonplace. Whether or not you consider sequencing your kids the responsible thing to do, knowing your family’s genetic makeup does have its benefits. Carriers of Huntington’s Disease, Cystic Fibrosis and Sickle Cell Anemia can now decide whether or not to take the risk of passing on harmful traits to their offspring. Screening embryos and using only those without genetic problems does seem logical. And it’s only a matter of time before we can genetically select out more diseases.
As the cost of genomic sequencing drops, we may see more commercial niches for gene therapy, including designer athletics and contracting for military personnel. But what are the implications of sharing this kind of information? If embryo screening and artificial design become legally permissible and universally accepted, widespread selective breeding could begin a new era in eugenics that, if unchecked, could favor certain populations over others based on politics, false perceptions and prejudice. Employers could choose to hire or fire based on a person’s genetic history. Privacy and patient confidentiality could be compromised if hospitals and insurance companies see genetic testing as a viable way to curb rising health care costs. Genetic makeup could provide yet another reason for disparities in housing, education, and employment.
Fortunately for now, we can breathe a bit easier. The Genetic Information Non-Discrimination Act (GINA) was passed in 2008 to prevent gene-based discrimination by employers and insurers. But the law does have a number of ambiguities, which leaves the future of genetic rights uncertain. Just because we have the rights doesn’t mean we want the world to have our genetic information. In the video below, Yale Professor of Biomedical Informatics Mark Gerstein touches on the issue of privacy around this new type of information sharing.
In the near future, screening your genes may be as commonplace as getting vaccinated. But the difference between getting the flu shot and eradicating Huntington’s Disease from your bloodline is a big one. At what point will citizens be responsible for cleaning up their own genome? When will that be determined and by whom? The scenarios presented here may seem daunting, and as we’ve seen with nuclear energy, stem cell research and genetic cloning, great power demands responsibility and foresight. There’s no compelling reason to think the human race won’t prevail over adversity. But we need to keep both eyes open as genetic testing develops, or we might just end up selecting out our rights along with all of that other unwanted stuff.
Comments
When will that be determined and by whom?
By women who have the full rights to our own bodies. I have not seen anything here which justifies abrogating reproductive choice.
When will that be determined and by whom?
By women who have the full rights to our own bodies. I have not seen anything here which justifies abrogating reproductive choice.
You want a discussion of genetic manipulation? Just watch the movie GATTACA. Now that I think of it, it mostly focuses on the cons of the technique (geneism, discrimination against normal born children, which ranges from rejecting normal children to kindergarten because they have high risk factor, to rejecting people for jobs because of their genes).
You want a discussion of genetic manipulation? Just watch the movie GATTACA. Now that I think of it, it mostly focuses on the cons of the technique (geneism, discrimination against normal born children, which ranges from rejecting normal children to kindergarten because they have high risk factor, to rejecting people for jobs because of their genes).
In my opinion, It is very controversial issue but the pros should be more than the cons.
In my opinion, It is very controversial issue but the pros should be more than the cons.