Genetic testing has become increasingly popular within the past couple of years thanks to advancements in the sexy world of science. However, as with most science agendas, many people begin to throw in that little, yet oh so powerful word, "ethics."
Genetic testing/screening is usually done before two people decide to have children, during pregnancy, or right after birth. The ethical question comes into play when couples decide to test during the first trimester and later determine whether or not to keep a fetus if they come to realize that he/she will have some sort of genetic error. While it is completely up to the couple to decide what path to take (I have no right to tell you my two cents on that), MY ethical concern is, what happens to all the rest of us who can't afford a genetic test?
While most tests can run you anywhere from a few $100 to a few $1000, it is clear to see that there will be a disparity between people who can actually afford to get one done. So I pose the question....is genetic testing ethically correct?
Let's say for example, we have a genetic test that will reduce the number of children in our population with Down Syndrome. Someone recently posed this question to me saying that the test would reduce the number of children born with Down Syndrome in the US by 66% (just a hypothetical number). However, the down side would be of course, that only those who could afford the test would benefit. Would you sacrifice and essentially throw the lower class under the bus to reduce the number of Down Syndrome cases?
And of course my response was hell to the no! My initial thought was " A Brave New World." Ha! No but really, as it is, the lower class can't afford health care period, and now we would be secluding them to deal with more diseases? The idea is simply unjust and inhumane.
But look around, it's already happening. We have so many different genetics tests and screenings that never make it out to our communities. So many affluent families are being screened for diseases and our counseled on when to have kids or to have kids at all. They are essentially only breeding the cream of their crop, while leaving us poor folk down in the dumps.
So even though I might have joked earlier, "A Brave New World" doesn't seem too far off from where we are at today.
Mmm now if that ain't food for thought, than I don't know what it is!
I got cut off because of the character limit, but I just wanted to say thanks for bringing up this important topic! I always appreciate the opportunity to work out my own thoughts on these types of medical ethics matters :)
ReplyDeleteAlso, I wanted to site my source on the Medi-cal coverage in LA. (http://www.lacare.org/files/English/file/Members/Medi-Cal/MCLA%202009-2010%20Handbook%20English.pdf).
While I agree with your fundamental assumption that equal access to healthcare is an ethical imperative, I have a slightly different perspective on the details of your argument:
ReplyDeleteI have one factual disagreement with your essay. You state: “No but really, as it is, the lower class can't afford health care period, and now we would be secluding them to deal with more diseases?” In this sentence, you imply that by diagnosing and terminating more pregnancies of wealthy moms, you are increasing the number of affected babies that will be born to poorer mothers. This is not the situation! The number of cases for low-income women would stay constant. Moreover, theoretically, you would actually be increasing the proportion of resources that are available for those children who are born with these genetic diseases.
More fundamentally, though, I don’t believe that the “If everyone can’t have it, no one should” philosophy is productive or ethical in and of itself. For example – if I have 100 kilos of food, and I have to divide it between all the starving people in the world, I obviously don’t have enough to give everyone. Does that mean that I shouldn’t give it to anyone? I don’t believe so, I think I should give it to those who have access (roads, and infrastructure), and then work on 1) getting more food, and 2) increasing access to that food. By doing this I can use what I have to make immediate change and use the benefits of what I started with to gain momentum in a movement towards feeding all of the hungry people in the world.
While it would be ideal to give the food (or in this case, genetic testing) to those who need it most, the government might not have the infrastructure in place to be able to get the food to those individuals (or in this case, public funding to get genetic testing to the middle and lower classes), and if you try you might just end up with a lot of spoiled food (lack of private funding and interest halting the development of new genetic testing).
The current approach could be moderately successful in doing this: many medical technologies become accessible to the rich first (which I agree is wrong), but then become increasingly accessible to the middle and lower classes as patents ware off (ideally). The bottom line is that almost all of healthcare works this way, but to make change, we need to think critically about how we can deliver more equal way to the poor and to devise models of care that will put these ideas into action. I’d love to hear your thoughts for improvement! :)(Personally, I’m trying really hard to remember the political economics books I’ve read about global poverty, but instituting a “preferential option for the poor” comes to mind).
While I agree with your fundamental assumption that equal access to healthcare is an ethical imperative, I have a slightly different perspective on the details of your argument:
ReplyDeleteI have one factual disagreement with your essay. You state: “No but really, as it is, the lower class can't afford health care period, and now we would be secluding them to deal with more diseases?” In this sentence, you imply that by diagnosing and terminating more pregnancies of wealthy moms, you are increasing the number of affected babies that will be born to poorer mothers. This is not the situation! The number of cases for low-income women would stay constant. Moreover, theoretically, you would actually be increasing the proportion of resources that are available for those children who are born with these genetic diseases.
More fundamentally, though, I don’t believe that the “If everyone can’t have it, no one should” philosophy is productive or ethical in and of itself. For example – if I have 100 kilos of food, and I have to divide it between all the starving people in the world, I obviously don’t have enough to give everyone. Does that mean that I shouldn’t give it to anyone? I don’t believe so, I think I should give it to those who have access (roads, and infrastructure), and then work on 1) getting more food, and 2) increasing access to that food. By doing this I can use what I have to make immediate change and use the benefits of what I started with to gain momentum in a movement towards feeding all of the hungry people in the world.
but instituting a “preferential option for the poor” comes to mind).
ReplyDeleteI have been trying to look into the coverage of genetic testing right now, but most of my information is from past experience with patients, not real sources. I did find online that currently, low-income pregnant women (including undocumented immigrants) can get Medicaid to cover them for the duration of their pregnancy. And I also found that at least in LA Medi-cal will cover genetic testing and counseling. Thus, the genetic testing is likely more accessible to lower-class women than you anticipated.
Regardless, I would urge you to consider that it is not the testing, per se, that is marring the lower-class, it is really access to abortions. In this case, there is a huge distinction between a diagnostic test and a treatment. The diagnostic test is genetic testing, and the treatment is pregnancy terminations. Without increasing access to treatment, increasing access to diagnostic testing will be inconsequential. As it is right now it can be very difficult for low-income women to terminate their pregnancies in a safe manner, and there are lots of people lobbying for that right to be taken away all together. Thus it is the lack of public funding for abortions that is really throwing us under the bus.
(Sorry for the botched posting, its my first time! hopefully you can see that the post at 11:57 goes first, then this one, and then the one at 11:55)
The problem isn’t the tool but rather the way it is used. Keep in mind, the “poor can’t afford healthcare period” is almost unique to America among developed nations. It’s not like healthcare, even advanced healthcare, cannot be utilized in a fairer way than we do here and now. But as with many tech advances, it starts out expensive and the cost will go down over time. Given the long-term cost to society of many of these diseases (in dollars and beyond), there would be an advantage to funding as wide of access as is feasible, but that in itself requires the technology to progress so that it can become that cheap.
ReplyDeleteCan this tool, misappropriated, actually make society worse? Fewer rich kids suffering from genetic disease does not worsen the condition of the poor. If anything, it could lead to better taxpayers to help the less fortunate. The dynamics of social mobility will remain unaffected. Either way, rich parents will still have resources to invest in capital, human capital, social capital, and cultural capital for the benefit of their offspring; it’s just that less of it will be spent on children with greater challenges due to genetic diseases, thus increasing the yield for society. The poor born with or without genetic disease will have no fewer opportunities than before (nor will the rate of their disease be affected in the short term, it will be reduced in the long term when costs go down or access goes up by other means). The ethics of genetics will be a different matter when we can genetically manipulate people to give them amazing abilities to push us into something like the caste system of Brave New World (one of my favorite books). Now that would be a very interesting ethical frontier. -Trevor
wow...first post touched on so many hot topics! Let me start by saying that I try to keep my posts simple so that 1) They won't take too much time away from studying to write and 2) So my readers won't get bored.
ReplyDeleteBUT you definitely touched on issues that I believe hold lots of merit. I guess my main insinuated point was that we should make these tests equally accessible to everyone. Like Trevor said below your post, it is not the tool that is the problem but the way we use it.
And you are right, my wording was off (I hope to become a better writer, starting with practice in this blog), but in the hypothetical situation, the lower class would have a greater proportion of disease.
But I would like to make a few comments on your statement that we would increase the proportion of resources available to these children with the disease.
1) Why is it that ish has to hit the fan before our people can get the resources they need?
2) Would we really increase their access to resources? I guess theoretically speaking, we would. BUT, I personally know parents who have had to maneuver through the "system" for years before getting hold of these resources. Most people can't afford to take the time to figure things out, and so they just give up :-/
As for thoughts on improving the system...it just so happens that I had a very intriguing convo about this last night.
ReplyDeleteI think we can all generally agree that we cannot follow the footsteps that others have set for us. We cannot just follow the plan they used, because it just won't work for us. We must learn from their mistakes and pave a new way.
Now what that path will consist of is still unknown...ha! But I think it's coming. As more and more of us go into higher ed, we will have more critical thinkers from these so called "underserved" populations that can help develop a system that will reduce disparity. (Ever heard of the Talented Tenth...must be my fav essay of all time!)
I think that's why it is also crucial for us in medicine to hold dual degrees...it helps us think outside of our sciencey box, and more at the bigger picture at stake.
But, I would like to say that currently, the system uses a trickle down effect...hope that all the good things at the top will eventually reach us down here at the bottom. And obviously that doesn't work...so why not do the opposite? A bottom up approach? Or maybe even a middle-side approach? Now, what exactly that would look like...I have no idea. But brainstorming is definitely the first step!
Oh and lastly, access to abortions...oh man don't even let me get started on that one. I spent an entire year over at the Natl Latina Institute for Reproductive Health, and the amount of knowledge I attained on reproductive justice was priceless!
ReplyDeleteI'm hoping to write a wonderful post on that soon.
Thanks for all your comments...they are truly appreciated!