How valuable is your personal genome sequence? The public decides!
There is no better way to start a post than to say that this is a good one! That is because it reviews two scientific papers which provided valuable market insight into how the general public views the value of genome sequencing. Have you thought about what it would be like to know the code of your genome, and what it means? If so, now you will be able to see what camp of thought you belong in compared to others.
The word value is tricky as it can have very different meanings to different people. It can be monetary, but it can also have a deeply personal value. In this post, we will look at value from multiple angles. How does the public see the medical utility value of genome sequencing? How does the public see the personal utility value of genome sequencing? How does the public see the cost value of genome sequencing?
Which one of these values would be most important to you: medical, personal utility, or cost? It is not a trivial question to answer!
To look into the genome sequencing cost value, we will look into one recent scientific paper. It was an interesting study that not only viewed how much the American public is willing to pay for genome sequencing results, but also whom they felt should decide what type of results they should obtain. This information was collected from interviews of a sample US population (410 adults).
In the first decision, people were asked: if you sequenced your genome, whom would you prefer to be responsible for deciding what type of sequencing results could be returned back to you in a report? There were three options, favoured as follows: it is an individual’s personal decision (43%), primary-care physicians decide (34%), or a panel of experts decides (24%).
My own personal choice would also be deciding for myself, although I would have offered another option: decide together with a primary-care physician. And in reality that most likely would be the case, if the return of incidental findings is an option in your required DNA test procedure, or if you went to your doctor desiring to obtain sequencing results to supplement your family medical history. Current regulations or recommendations - all that I have come across - stipulate that a recipient of any genetic testing needs to provide an informed consent. This means that a detailed background of what the test offers and what it will not deliver has to be explained to the recipient of the test. So any doctor who is offering genetic tests, or overseeing the results of genetic testing, will have to inform their patients of the test details. But the patient will always have an option of deciding what results they wish they to receive, if options are available. The doctor in turn can always refuse a service that they feel is not medically necessary and which would not be beneficial or could be harmful to a patient. This could include incidental findings. The patient can always seek other alternatives (don't worry, we can help in either situation).
Providing an option for a joint decision with the treating physician would help to decipher in more detail how much of the population would like to retain ownership of the decision but rely on expert advice from a professional.
The next big decision the interviewees were asked to make was regarding their willingness to pay for genomic testing results. Here the interviewees had two options: a basic report which includes information for which medical treatment is available, and additional information for which medical information is currently not available.
As a consultant in the private use of genome sequencing technologies, this is obviously very important information. But it also should be of importance to the general public. No matter what, genome sequencing is coming your way! One day, you are very likely to have at least some portion of your genome sequenced during your lifetime. But if you would consider doing it now, to get all of the information that can be interpreted from your biological code, how much do you think that is worth?
Well, here is what the general public had to say, and it may be surprising. All prices are in USD dollars for the following data: 38% would not want to pay anything for the information about themselves even though medical treatment would be available for the discovered conditions. Such information is referred to as "actionable variants", where variants is a polite way of saying mutations in the genome code, while actionable indicates that medical action can be taken to help an individual. So more than one third of those polled don't see any monetary value in such information. I wondered if the polled audience truly understood the value of the information that can be gleaned from their biological DNA program? Apparently, they had been informed, that we are talking about the potential discovery of a fatal disease that could be treated! Wow, really? That information is just "who cares" category? Fatal diseases that could be prevented are not worth anything? A beer? A cup of coffee? Perhaps a price of dinner? One pair of shoes? One of your phones or laptops you discarded in the past? As I said, the term "value" is a tricky one.
To my relief, the majority (53%) at least agreed that some monetary value is deserved for such information, and agreed that they would be willing to invest up to $500.
Bring the price tag higher, and the interest drops precipitously. 6% would be willing to pay up to $1000 for such information. This is more in line with what the soon to be expected value will be, although the reality is still bit pricier than that. Yes, you can now sequence your genome for under $1000, including its interpretation, but it is not mainstream yet. The vast majority of offered services would cost you more, and if you wanted the oversight of a medical geneticist specialist, then you can imagine that you would have to pay extra for that privilege, and expect to be set back by several thousand dollars. Thousand here, thousand there, again, it would depend on the service provider of your choice.
But the cold hard reality is that you can expect to definitely spend more than a $1000 to sequence your genome and obtain analysis based on the DNA code. And how many would be willing to pay for that? A whopping 3% of the population! So if you find yourself in that category, let us know, and we will definitely get you going in the right direction!
However, your genome is your entire blueprint, far beyond what current medicine can interpret and deal with. So how much were people willing to pay for such additional information that is not medically actionable?
Here you have to understand that comprehension of the variants in human genomes is growing at a fast rate! So this could include information that is not of much use today, but it could be very important information tomorrow. Some of it might never be of use, but this is the benefit of a genome sequence: it can always be looked at again and again, ha, even after you are dead! Genome sequence information stores interpretation value for eternity in fact! Just ask all of the scientists who are sequencing ancient fossils to learn about our past.
The same goes for your genome! It holds value for generations to come for all of your descendants. Because it helps to decipher the patterns of inheritance, and such information could be leveraged to predict and monitor potential outcomes before they even happen, or rapidly identify the potential root cause of a condition that might show up in a family. And it makes sense: it is your biological code that is passed on from generation to generation. Of course with each generation, less and less of your DNA code will remain in your descendants, as it is diluted by the addition of 50% of new DNA information when one of your descendants finds a soulmate to have kids with.
So let's get back to the payment query. Have you thought about how much you would pay for non-medically actionable genetic information, if any? Here, not surprisingly, the results are bit different. 55% of those polled would not pay anything for such information. Almost one third (29%) would pay up to $200 for such intelligence. This is the market niche for DNA ancestry tests, which are typically in this price range, and are not associated with medical benefits (although your ethnicity has a huge bearing on how your medically actionable part of the genome is interpreted), but are wildly popular to curiosity-seekers. And apparently there is room for more, as an additional 9% exhibited a willingness to pay up to $400 for such information, and another 7% would consider paying even more than that.
Adding these two costs - for medically actionable information and for information of no medical value - brings the total cost for those most willing to pay the most closer in line with the real costs of genome sequencing. So somewhere around 5% of the population would be willing to pay what is currently approaching to be the true (albeit still on the minimal side) cost of genome sequencing.
Let's switch gears abruptly and explore some more concepts regarding value. Here we will look at the concept of the perceived personal utility of genome sequencing by sample of presumed healthy people, and cardiology patients alike. Again, perhaps a tricky term to define, so I will just borrow directly from the science publication: "Personal utility refers to using genomic information for decisions, actions or self-understanding that may be health-related, but may not have direct medical benefit".
What are these genome sequencing utility items? Here is their golden list of how DNA testing on a genome scale can potentially help you:
- identify disease risk
- influence treatment
- influence medical care
- influence medications
- influence end-of-life planning
- influence reproductive decisions
As you read this list, which one appears most important to you? The last two items are considered purely personal utility only and do not have a clinical value from a physician's perspective. The authors of the study took such views of their sample group, and categorized the individuals into three groups based on their answers. Almost a quarter, 23% of them, were labelled as "enthusiasts", and agreed with the value of all of the above utility items of genome sequencing.
The next group, labeled "health conscious", agreed with the value of medically relevant items (they tended not to care so much for the last two items on our golden list), and comprised 60% of the sampled individuals. This means that enthusiasts are also captured by the personal utility of genome sequencing that extends beyond medical implications, whereas the majority is focused on the medical utility.
And finally, 17% of the group were labelled as skeptics, where they tended not to care much for any of the mentioned items (with disease risk identification and medical care influence being the most favoured items).
So which group would you find yourself in? Obviously skeptics would also most likely not care to pay much at all for such tests, while enthusiasts, as is always the case, are willing to pony up more capital towards exploring new ground.
What did differentiate the three groups from each other? Trust in the information, which was significantly higher in enthusiasts and health conscious groups over the skeptics, included trust in the genome interpretation and its appropriate dissemination by healthcare professionals. These are valid points, as indeed these are the potential pitfalls of where the genome sequencing experience can go wrong. Not every genome sequencing service provider is of the same quality, and one genome interpretation does not always equal another. The same can be said of a doctor’s ability to handle such sensitive information, and many would be poorly prepared to deal with the results report if you shoved it today in their hands. But it also does not mean that such powerful technology is to be dismissed on account of few bad apples.
There was one interesting common unifying factor between all three groups: they all agreed that the future utility of genomic information will continue to increase over time. As I mentioned, your genome sequence can be re-analyzed over and over as information databanks grow, and some companies offer such future re-analysis for free! Well, nothing is free, so even though you might have your genome re-analyzed, your genome information is also in someone else's hands, and believe me, big profits are made from all the genomes that different companies are currently collecting.
One potential limitation of this publication that was mentioned is that it does not represent the general population. As the authors mentioned, their participants were "highly knowledgeable about genomic concepts, well-educated and relatively affluent". Well, indeed that might not reflect your general population but it summarizes well what part of the population would typically purchase genome sequencing.
So if you are an enthusiast, or health conscious, and are potentially interested in genome sequencing, especially if you find yourself in that small percentage of people that accurately value the cost of such a procedure, contact us and we will do our best to line you up with right providers, including the right medical oversight. As you can see, much value can be gained from a single test!
This article has been produced by Merogenomics Inc. and edited by Kerri Bryant. Reproduction and reuse of any portion of this content requires Merogenomics Inc. permission and source acknowledgment. It is your responsibility to obtain additional permissions from the third party owners that might be cited by Merogenomics Inc. Merogenomics Inc. disclaims any responsibility for any use you make of content owned by third parties without their permission.
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