The rate of which genome analysis is becoming cheaper, faster, and more available is staggering. On April 14, 2003, The Human Genome project was completed,
(http://www.genome.gov/11006943) and it was considered a feat of science which came at a great cost of resources and time; over 2.7 billion dollars of taxpayer dollars, over 13 years. Now that we know what we’re doing, and have computer processing power that dwarfs that of the 90’s, genome analysis is easier than ever. Just how easy? You can get your genome sequenced for about 100 bucks.
(http://www.genome.gov/11006943) and it was considered a feat of science which came at a great cost of resources and time; over 2.7 billion dollars of taxpayer dollars, over 13 years. Now that we know what we’re doing, and have computer processing power that dwarfs that of the 90’s, genome analysis is easier than ever. Just how easy? You can get your genome sequenced for about 100 bucks.
23andMe (https://www.23andme.com/) is a service that sells DNA sampling tests to be analyzed for the customer in fun, exciting ways. For 99 US dollars, they send you a kit that allows you to take a sample of your spit, which you send back to them in a prepaid package. They will analyze your DNA for you and look for phenotypes associated with a number of traits. Such traits include your proclivity for running long distances or short sprints, or simpler things like hair color. More than that, 23andMe can help paint your family tree; connecting your genes to other people who have submitted their DNA. The service takes information on your mitochondrial DNA to trace your maternal lineage, and those privileged with a Y chromosome can trace their male lineage as well. They can use your DNA to discern your ethnic ancestry down to specific locations such as the British Isles and Native America.
You can even find the close and distant relatives from anywhere across the nation, leading to some unexpected discoveries on who you’re related to, or perhaps not related to in the way you once thought. The website advises you to cautiously keep this in mind before trying the service.
You can even find the close and distant relatives from anywhere across the nation, leading to some unexpected discoveries on who you’re related to, or perhaps not related to in the way you once thought. The website advises you to cautiously keep this in mind before trying the service.
23andMe used to provide reports on health related information. They would provide the base risk of a disease in any average individual, and use your genetic information to discern your risk in comparison. As many as 20% of men will get prostate cancer in their lifetime, and your genes can tell if you’re at a reduced risk, increased risk, or have an imminent risk of getting it. The information was understandably highly controversial, and customers had a choice to opt out of seeing the information. But the real problem. The food and drug administration flagged the company for a legal issue, as the information was labeled as “medical advice” which were treated as diagnoses. In the eyes of the FDA, it’s not legitimate for an independent company like 23andMe to give out diagnoses to customers, as they aren't medically certified like a doctor is.
My question to you bloggers is: should independent companies such as 23andMe have the right to provide health related information to their customers, or should all medical advice and diagnosis be facilitated through a medical professional, such as a personal doctor? 23andMe provides what amounts to a report on raw, uninterpreted genetic data only. The projected health risks are not interpretations but a collection of associated health risks based on your genotypes. Can this information be interpreted as diagnosis? I don’t believe so; since a diagnosis warrants a degree of interpretation, while this info is just a rehashing of data associated with your genetics.
Between the time I started writing this blog post and actually posted it, 23andMe announced that the FDA has just begun to accept 23andMe's stance that their info is uninterpreted and not a diagnostic interpretation. https://www.23andme.com/health/
Edit: A lot of you have posted questions and concerns of the privacy associated with a private company collecting genetic data. At the rate of which genetic technology progresses, this is a legitimate concern. There is potential for insurance companies to use the info to increase insurance rates based on your increased risk for diseases. There is a risk of being discriminated in the professional environment, where employers may be inclined not to hire you if you're at risk for developing disruptive diseases such as dementia. This is especially so if you rely on your employment for healthcare. Depending on how public your info becomes, there is even potential for marketers to display advertisements that are sensitive to your genes, such as for selling prescription medicine. As the genetics industry grows and becomes more accessible to everyone, the need for privacy must be taken seriously. 23andMe provides a privacy statement on their website, here. https://www.23andme.com/about/privacy/
Edit: A lot of you have posted questions and concerns of the privacy associated with a private company collecting genetic data. At the rate of which genetic technology progresses, this is a legitimate concern. There is potential for insurance companies to use the info to increase insurance rates based on your increased risk for diseases. There is a risk of being discriminated in the professional environment, where employers may be inclined not to hire you if you're at risk for developing disruptive diseases such as dementia. This is especially so if you rely on your employment for healthcare. Depending on how public your info becomes, there is even potential for marketers to display advertisements that are sensitive to your genes, such as for selling prescription medicine. As the genetics industry grows and becomes more accessible to everyone, the need for privacy must be taken seriously. 23andMe provides a privacy statement on their website, here. https://www.23andme.com/about/privacy/
This service seems as though it would be useful, interesting, and affordable for many people. I do, however, see the ethical implications of knowing whether or not a specific disease is in your future. While it may be helpful to those who are worried about their family history, it may devastate those who didn't anticipate that news, and create a paralyzing fear until the onset. Technology certainly has its pros and cons.
ReplyDelete-Meghan Harrington
Your concern is nearly universal and acknowledged by the company. While the medical info was available, 23andMe provides the option for people not to view the medical information if they chose. The choice lies on the customer whether to know their risks ahead of time so they can prepare, or live free of the fear of potential increased risk, which may turn out to be inconsequential.
Delete-Patrick O'Loughlin
Of course they should be allowed to attach the dangers of the person's DNA along with their genome, it's as much of an analyzation as you're going to get from the company. The real question is if it should be interpreted as medical advice, and I believe that it should be. That information should be sent to the patient's doctors (on a need to know basis) because it's one of the major causes of cancer later in life. However, if people fear knowledge, maybe they shouldn't be seeking answers in the first place.
ReplyDelete-Ethan
If the company states clearly that the information is is correlation and not necessarily a medical diagnoses that the service should exist. I am concerned with the idea of a private company in possession of medical information and the potential moral issues that presents in terms of confidentiality.
ReplyDelete-Daniel Bonkowski
This is a concern that we've discussed in my Advanced Genetics class. A lot of people underestimate the issue of privacy when it comes to their genetic info being known. It seems alien now, but it's forseeable that genetic data could be used to discriminate people who, for example, are looking for a job, but have an increased risk of developing Dementia. This would be illegal among any other sort of discrimination, but it's difficult to prevent if your genetic info is made public. Worse yet, imagine if your genetic info got into the hands of marketers. Combined with the internet, it wouldn't be difficult for advertisers to target say, recovering alcoholics with advertisements for alcohol.
DeleteAs technology for genetic sequencing blooms, the privacy issue must be taken seriously.
-Patrick O'Loughlin
A good middle ground would be to bring a couple of doctors on board with the project, with the purpose of analyzing the consumer's DNA and providing insight into the genetic code. I think that this is a pretty reasonable option, especially if it's opt-in on the consumer's behalf.
ReplyDelete~David Almanzar
DeleteI feel as though if someone is getting their genome sequenced they should have an understanding of the genome and what the data points are that the company bases its "results" off of. The thing that concerns me about this process is the ability of the company to share your genetic information. The information could be very helpful for researchers to form huge data bases but what if insurance companies could get their hands on your genetic information and base your health insurance coverage and prices off of this?
ReplyDelete-Cullan Bartel
This is a really interesting post. It's a pretty controversial topic whether people should have access to this information. Is there any timeline in place for the health reports coming back?
ReplyDelete-Carolyn McDonagh