Research (Basics 5); Premonition 5
Today in Bioethics (well, soon as we finish chapters 4)...
we'll talk "research." Things like clinical trials and research involving animals and their rights, and genetics, and epidemiology. We'll look at the funding gap between what we need to cure and where our research dollars are actually going, and at the moral imperative of genuine and informed consent. We'll look at disturbing instances of fraudulent and dishonest research. And we'll consider Peter Singer's claims about "speciesism."
The future of research is a daunting source of apprehension and speculation. Michael Sandel and Bill McKibben have aired serious concerns about genetic and other "enhancement" research as potentially catastrophic for our capacity to achieve or even recognize "meaningful" lives. Enhanced may not mean improved.
1. Name one of the basic requirements agreed upon by all codes devised to protect individuals from malicious research.
2. What decree states that consent must be gained in all experimentation with human beings?
3. Name one of four areas of research discussed in the book.
4. Which famous contemporary ethicist is a sharp critic of speciesism?
5. Name one of four R's used in international legislation pertaining to animal rights in research?
6. Dilemmas in epidemiological research illiustrate what general point?
7. What did Hwang Woo-suk do?
8. What is the term for altering the numbers in a calculation to make the hypothesis more convincing, with no justification form the research findings for such members?
9. What categories of human enhancement does Campbell enumerate, and what does he identify as its "extreme end"?
10. What is the "10/90 Gap"?
The future of research is a daunting source of apprehension and speculation. Michael Sandel and Bill McKibben have aired serious concerns about genetic and other "enhancement" research as potentially catastrophic for our capacity to achieve or even recognize "meaningful" lives. Enhanced may not mean improved.
1. Name one of the basic requirements agreed upon by all codes devised to protect individuals from malicious research.
2. What decree states that consent must be gained in all experimentation with human beings?
3. Name one of four areas of research discussed in the book.
4. Which famous contemporary ethicist is a sharp critic of speciesism?
5. Name one of four R's used in international legislation pertaining to animal rights in research?
6. Dilemmas in epidemiological research illiustrate what general point?
7. What did Hwang Woo-suk do?
8. What is the term for altering the numbers in a calculation to make the hypothesis more convincing, with no justification form the research findings for such members?
9. What categories of human enhancement does Campbell enumerate, and what does he identify as its "extreme end"?
10. What is the "10/90 Gap"?
Premonition
1. Watching "smart" people leave the White House, what did Carter learn about governmental inefficiency?
2. What happened when President Obama visited Mexico, prompting his meeting with Carter?
3. Why did Richard keep a detailed journal in the White House?
4. What was this book's eponymous "premonition"?
5. What Presidential decision "worked out" but was nonetheless wrong, in Richard's view?
6. What strange childhood experience altered Carter's thinking about pandemic preparednes?
7. Despite her academic adviser's suggestion that she drop science, Charity Dean fell in love with microbiology and learned what?
8. The U.S really doesn't have what, according to Charity?
DQ:
- Can there really ever be "fully informed" voluntary consent, given the many unknown variables and unpredicted consequences involved in most research?
- Discuss: "Trials of pharmaceuticals may be driven as much by commercial considerations as by the likelihood of real therapeutic gain." 122
- What concerns do you have about the use of animals in medical research? Is speciesism one of them? 10 medical breakthroughs due to animal testing... PETA... Touring an animal research facility
- What limits, if any, would you like to see imposed on genetic research and the uses to which it may be put?
- Were ethical improprieties committed in the case of Henrietta Lacks, whose cells (HELA cells) were harvested without her consent? (Rebecca Skloot... BBC...CBS...)
- If "dreams of perfect health by the better-off will determine the research agenda" in the future, resulting in soaring health care costs and greater health "enhancement" opportunities for the wealthy, what should be done to insure adequate attention to "the health problems of most of the world's population"? 129
- Should we be worried about a "Prozac revolution" and a "brave new world" of somatically-induced apathetic bliss? 130
- Would you give special priority to any of Campbell's five enhancement categories (130)? Is "Transcendence"-style enhancement beyond the realm of reasonable concern (given the considerable monied interest of people like Larry Page)?
- Comment: "Why would we want such a 'posthuman' future? Are our lives better if we become physically stronger or more agile, or have an increased intelligence, or live for centuries?" 131
- Is the outsourcing of clinical drug trials to developing countries ethically defensible? 132
- How would you propose making research priorities "aligned to the needs of the majority"? 133
- Is it likely that biobanks and other communitarian initiatives will in the future "prioritize health research according to need rather than profit," particularly in the U.S.? Would you support such a reprioritizing? How?
- Have you seen Sicko? Care to share a review? Or of Michael Moore's latest doc'y?
Can there really ever be "fully informed" voluntary consent, given the many unknown variables and unpredicted consequences involved in most research?
ReplyDeleteThere are always outside factors at play that will manipulate our decision-making, so I don’t think there is ever really 100% truly informed consent. While this is the case, I don’t think it means that the person in question does get the desired treatment; rather, I believe that outside influences are infintesamly large that it is impossible not to consider their affects on an individual's decision-making. In addition, the description of what certain research entails is so complicated that it is not clear to the subject what exactly the research is. In other words, if they were able to understand the research or procedure, they might make a different decision. There is also the issue of outside social influence. One of the most common forms of this is via family influence, where the values of the family is prioritized over the values of the individual who is actually inflicted with the disease, disability, etc.
Regardless of outside influence, with exception to the the patient not being mentally capable, the final choices lies with the individual getting the procedure. It is not the responsibility of a doctor to have to play detective to ensure that the patient is not being influenced in a perceived negative way.
DeleteThe doctor's responsibility is for the doctor to supply the patient with any pertinent information, answer any questions truthfully, and allow the patient to have the final say. If the doctor has any qualms about the treatment for the patient they are within their rights to refuse to sign off, if the treatment is elective or non-time sensitive, and allow the patient to find one less scrupulous.
What decree states that consent must be gained in all experimentation with human beings?
ReplyDeleteThis is known as the Nuremberg Code, which was created during the Nuremberg trials. Subject autonomy and the right for someone to make their own decisions based on their situation are imperative factors when looking at research from a bioethical perspective. While other factors of consent can be argued, I would say that autonomy is the most important factor to consider in both patient care and research participation. At the end of the day, it is important to sustain the liberty of all people, and the way we can do this is by preserving the autonomy of every person.
What is the 10/90 gap?
ReplyDeleteThe 10/90 gap refers to how less than 10% of funds spent on pharmacueticals is used for 90% of the global disease. When I read this, I was shocked. I knew that big pharmaceutical was a corrupt side of business, but I didn’t realize that more of our funds were being diverted from what we should prioritize to this level. Instead of our funds being put towards something that is causing death, pharmaceutical companies are putting money towards “me too” drugs that are simply only done for commercial gain. It is sad and shocking that today corporations are this hell bent on making money rather than preserving the lives of those suffering.
Corporations are persons only in a narrow legal sense. If we want them to prioritize public health over private profit we'll have to mandate that via regulation. But that doesn't seem to be the favored approach these days.
DeleteWe simply have no business in telling what private pharam companies, or any private company, what to spend their money and time on. If we want them to develop drugs got the 90% their needs to be financial incentive to do so. Since these 90% countries are usually quite poor, government subsidies would be the best way to get funding.
DeleteHowever, they you have a government body spending a ton of money on something that doesn't directly help their tax payers and citizens. The countries these drugs are going to help would have to give some kind of concession to make it a fair trade.
or perhaps Forrest, we should use our great material wealth to benefit the world? the vast majority of our raw resources come from underdeveloped countries with poor labor laws and working conditions. maybe curing disease in these countries should be our way of giving a concession instead of just taking taking and taking more.
DeleteI was also shocked when I heard about the 10/90 gap but in a way, I’m also not surprised. Of course companies would rather put their profit over the better good of humanity. I guess I’m just shocked the gap is that big. Like other people in this comment section have stated, only incentives like government mandates seem to be enough to motivate Big Pharma to do any good. Which is why I do believe the government should be involved and there definitely need to be more regulation.
Delete"Why would we want such a 'posthuman' future? Are our lives better if we become physically stronger or more agile, or have an increased intelligence, or live for centuries?
ReplyDeleteI definitely understand the appeal here, especially the ability to live much longer. It seems like we have such a truly short amount of time on earth. Living that long might be torturous if your friends didn't have access to similar technology.
The idea of it makes me nervous. To me, it feels like when people say "transhuman", they really mean "homogeneous", and I worry that sort of tech would be used to exacerbate social divisions. Everyone is strong and smart and lives forever (if they can afford the technology) and no one has to look at or think about the outcasts anymore because they're practically mayflies :) I could ever see the argument being peddled that anyone who's not extending their lifespan shouldn't get to vote, since decisions they make will impact the elite humans for centuries longer. Though I might be being overly pessimistic, and maybe a bit paranoid.
DeleteThere will always be those are who are more well off that others. Preventing them from access to technology that is not available to everyone right now is both morally and logically wrong.
DeleteMorally because punishing people for success is wrong. Logically because almost every new technology starts off only being available to more wealthy people, then becomes cheaper and more available over time.
As for the "mayfly"point, I can guarantee you a large amount of the rich and powerful already see the average person like that. Your response should not be to hate them for it and try to tear them down, but to either become rich/powerful yourself or live a happy life with what you have.
so we should allow others to look down upon us? and instead of arguing that all human life has equal value we should strive to become like those who hate the unwashed masses beneath them?
DeleteI like the idea of certain transhumanistic technologies that allow for a greater range of human expression. I think that an important responsibility of our society is to look to the future for new ways to live and I think that includes being open to making modifications to our bodies. Having said that, the idea of prolonging one's life indefinitely does indeed sound torturous and I can't imagine anyone actually wanting to go ahead with that. And if we develop that type of technology and it is available only at a high cost then I think it would be our duty to ban it to prevent the most powerful people in society from becoming even more powerful. We would basically be ruled by immortal vampire lords who perpetuate our misery for their plans.
DeleteI also get the appeal but I would feel as becoming post human would kind of make us not human anymore. It’s not a natural evolution but rather one that consists of “biohacking.” I agree that living forever does seem torturous and unnatural for us especially since not all of us will “evolve” to live forever only the ones with access to doing so. As well, living for such a long period of time will have consequences to not only humans but other species too since human have negatively affected many ecosystems and natural orders of our world.
DeleteThe four Rs of animal rights legislation are respect, reduction, refinement, and replacement. I have to admit that the latter gives me pause. The idea of "replacement" is that, wherever possible, testing that would be performed on animals should instead be performed with alternative methods (the book mentions computer programs as an example), or by testing on animals in a "lower order". Firstly, I don't even understand how a computer program would work for something like this?? Say you're testing a new drug or something. If you already know enough about how it'll work in a human body to be able to simulate it accurately, then why would there be a need to do further testing anyway?? Honestly I think I might be just completely misunderstanding what "computer programs" would entail for this type of testing because I have no earthly idea why that would ever work as an alternate to animal testing.
ReplyDeleteMy second issue with this - I don't like the idea of "lower-order" life forms. (One issue is that the more different from us animals get, the less applicable research becomes, but that's not especially relevant to this course.) I don't think there's any moral difference between testing on dogs vs mice, or even dogs vs crabs. They're all equally capable of suffering. Why should we care about one species more than the other? Though this then leads one to question why humans should be an exception to this, which is something I don't really have an answer for as someone who's not religious. If I'm not willing to make a distinction between dogs and crabs, why am I willing to draw a hard line and say humans are different? I don't have an explanation for it other than the idea of "personhood", but is it fair for me to say that a dog isn't a person? Or even a crab? I'd say it is, but honestly, I can't put a finger on why.
Drug metabolic pathways are often esoteric, interacting with our physiology in unpredicted ways. If we were able to accurately simulate the metabolism of a human we could simulate these drugs and observe the reactions they undergo. I believe a program like this would not rely on our knowledge of the novel drug but instead would rely upon our understanding of the biochemical mechanisms of our anatomy. regarding the end of your second paragraph, I believe the common delineation between animal and man is the capacity for reason, not the capability to suffer. though I do agree that simulation is a better alternative to potential suffering.
DeleteI respect your belief that all life forms have equal moral capacity but I disagree. And I don’t necessarily have any evidence to support my beliefs by the way, it’s just something I subjectively believe based on my intuition. I think that moral value directly corresponds to one’s capacity to experience suffering/wellbeing.
DeleteWhat limits, if any, would you like to see imposed on genetic research and the uses to which it may be put?
ReplyDeleteThe only limits on genetic research should be the willingness of the participants that they are performed on. Any other restrictions will do little but stifle progress in a field heavily marred by red tape.
I would like the limit on genetic research to be also the willingness of the participants but also I’m against any inhuman advancements. I know this is already a discussion but children that are made to be “savior” babies through IVF.
Delete7. What did Hwang Woo-suk do?
ReplyDeleteHwang Woo-suk is a South Korean animal-cloning expert and researcher. He and his collaborators published in Science a paper on the establishment of the first human embryonic stem cell with the somatic cell nuclear transfer method. He was known for his work in cloning and assisted reproduction in cows.
10. What is the "10/90 Gap"?
ReplyDeleteThe "10/90 Gap" is the idea that only 10% of global health research is devoted to conditions accounting for 90% of the global disease burden.This basically means that most research focuses on health issues impacting a smaller portion of the world while neglecting major health problems in poorer regions.
4. What was this book's eponymous "premonition"?
ReplyDeleteA couple months into the swine flu pandemic, Richard sensed that his journal might be a valuable historical document. Once it became clear that swine flu would come and go, like a massive hurricane that dissipated before making landfall, it became something else. A message in a bottle/a warning.
What concerns do you have about the use of animals in medical research? Is speciesism one of them?
ReplyDeleteI am personally very concerned about the use of animals in medical research, because they are not protected by rights. Animals can be easily mistreated, and their abuse often goes unacknowledged or unknown because they have no means of expressing their detailed thoughts to us. I don’t know what the implementation of animal rights protections would look like exactly but I know it’s an ideal we should strive for.
For the concern of “voluntary consent” I think it is possible to have consent on research as long as the other party knows that there are unknowns. To consent, one must know that there are things that neither party know of that may arise.
ReplyDeleteEthical improprieties were committed with the HELA cells, which have been used to create many breakthroughs in medical technology. It’s a mixed bag ethically, considering good things came out of a bad decision to harvest cancer cells and not give credit for the longest time. It’s hard to answer this ethically.
For a post-human society, I don’t know exactly why we would want to become something non-human and more machine than man. Transhumanist ideologies are a mixed bag ethically as well.
2. The Nuremberg Code states that consent must be gained in all experimentation with human beings. Fully understanding the nature of what treatment you're being put under is an important stride in ethical decisions.
ReplyDelete3. One of the four areas of research discussed in the book is clinical trials. These always interested me as they cultivate a lot of psychological phenomena such as the placebo effect and observation bias that show how our interactions can be heavily affected by being in a controlled environment.
7. Hwang Woo-suk was a South Korean stem cell researcher who falsely published that he had succeeded in creating the first cloned human embryo. The pressure to succeed can be helpful but sometimes pushes people into negatively impacting the scientific field.