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When we recycle our trash at the curb, we receive a little kick-back on our trash costs. A decrement in our cost of medical services - certainly equal to the apportioned cost of tissue disposal would psychologically have the same effect. We want a sense of control, courtesy, and justice, not an incalculable and probably unrealizable market value. I suspect that a little courtesy would go a long way toward turning back litigious propensity.
I don't think researchers *should* have to pay for the tissue, however I can see a situation where patients take exception to their tissue being used without compensation. It could lead to the rise of patients litigating against researchers who use their tissue in this way, and it might just be simpler in the long run to compensate them.
Definitely not. This would make it hard for small research institutions to conduct their studies. Also, I don't see why anyone would want to keep their own quantity of surgically removed dead tissue cells and if anything they should pay to have them discarded (though I hope that does not happen). One last thing, scientists don't make much money yet have a crucial role in the development of various aspects of our civilization and this would just depress the process and place unnecessary pressure on them.
The idea that we have to be paid for what is of no use to us seems to overextend the concept of property. Property, in a legal sense, exists because it serves certain purposes. For example, legal protection of property; provides incentive for the use of property (for production); incentives for its maintenance and improvement (so that it may be passed on in the future by selling it); incentives to transfer through trading; protection against risk of loss when something must be depended on; etc. (See S. Shavell "Foundations of economic analysis of law", 2004, ch. 2.) None of these justifications apply with any clarity to the case of discarded tissue. One might argue that the compensation is for the risk of harm from someone using information about the donor to harm the donor, but protection of property rights seems to be an extremely crude way to prevent such harm. (Tort law, criminal law, and regulation, applied directly to the harmful behavior, are more effective tools.)
The "Science" poll question is prejudicial in that it asks respondents to presume that the tissue will be discarded. Had "would otherwise" been changed to "might otherwise," would many respondents have voted differently?
I believe the current practice of taking and profiting from patients' tissues as amoral verging on immoral. Evidently, members of the medical research community take tissues from living subjects and appropriate it to themselves. As the Henrietta Lacks example shows, they feel no compunction about profiting personally from someone else's body, rationalizing (per the article and letter by Truog, Kesselheim, and Joffe in "Science") that it's all in the interest of research.
Confronted with the question of whose "property" the tissue is, the medical subject's or the researchers', Truog et al. changed the subject by asserting that it would be administratively difficult to let medical subjects share in profits made off their bodies, and also by making ex cathedra claims that paying subjects would reduce the incidence of tissue donations (as though the tissues are truly being "donated" in the first place!).
I have been active in physical science research for more than 40 years, and I am astonished at the arrogance and warped "ethics" of the assertions by Truog et al. I hope the medical community at large doesn't share the attitude that patients are objects rather than human beings.
The researchers who used Henrietta Lacks' tumor cells knew her and the family, and knew fairly soon after their discovery that this was going to be important. It would have been good in that case if they could have offered free health care to her immediate family in return for the discovery that would benefit both science and business for many years to come.
It would be a really good thing if patients could be compensated when otherwise-to-be-discarded tissue was found to have scientific or commercial value. Interestingly, privacy regulations are one of the many barriers to a potential system for compensation.
The distinction between research and commercial use is becoming increasingly fuzzy as much good research is done in, or in collaboration with, commercial entities. The prohibition of commercial use for many biorepository samples is hampering research now, and promises to hamper it further until the pendulum finally begins to swing the other way again.
The medical community makes enormous profits from the people already, they can afford to pay for their research materials. If we can't afford their new procedures, we are allowed to die.
Yes people should be compensated. The tissue is yours and you should have any right to do with as you please within reason. Get paid for your tissue if you can or throw it away. Just like any store or business does everyday with there inventory. In my mind it is no different than remodeling someones house and having extra materials left over that the customer paid for and therefore owns. Its the owners decision to do with it as they please because it is there property. If I take it without thier onsent then it is called stealing and I go to jail. If it is going to be used as research then that person needs to be notified and permission given. Anything else is criminal in my mind..
No, I believe no compensation is necessary. However, I believe a patient has the right to be informed about an option of donating excess tissue for research purposes. Furthermore, they should be actively involved in the decision to hand it over and reserve the right to refuse release.
I think the question shouldn't be whether "researchers should be required to pay for human tissue that would otherwise be discarded," but rather "should patients have the option to charge researchers for the use of their tissues that would have otherwise been discarded." I believe the answer to the second question should be, "yes."
We have to pay for bacteria, viruses, insects, and animals to use in science research. We're not allowed to use FREE bacteria, viruses, insects, mice, and rats found simply roaming around the earth (due to the need for "controlled" and somewhat regulated samples). Yes, we are allowed to grow and breed specimens in regulated facilities; however the starting line for these still must begin from a regulated and/or purchased specimen. So why shouldn't we have to pay for human tissues that we want to experiment with?
So what if the tissues were going to be discarded. That person had to pay for the doctor’s visit, surgery, and/or procedure and/or premium to cover their insurance payment every month to afford that visit. Yet, we scientists just receive their tissue for free? Even if that person did not directly pay for their health care, we have no right take any options from a patient concerning what happens to their tissues following a procedure. That patient should be provided with the option to make a donation to our research, for us to pay them for their tissue, or to discard their tissue without us or anyone else having the option to use it at all.
I have a second, though probably more important, concern about human tissue samples that would have otherwise been discarded being used in scientific research. If patients aren't being paid for the use of their otherwise discarded tissues are they still receiving CLEARLY SPECIFIED informed consent concerning the possible research use of their discarded tissues? I am not referring a short sentence or small blurb written on page 11 of the surgery waiver of liability form that the patient signs prior to the procedure, but a separate informed consent given to the patient by a research coordinator or health care professional. The majority of informed consent is provided to patients for any ADDITIONAL blood or tissue samples that are requested for research use, not for tissue that would have otherwise been discarded.
We know that every patient should told beforehand whether any part of their being will be used in research - period. When a person believes that their tissues or cells will be securely discarded of, doing otherwise is akin to digging through the trash bin of someone's home or an unauthorized or warrant-less person/agency going through someone's deleted emails from 10 years ago. It's an invasion of privacy and to many people it's similar to theft and a violation of their personal space or being.
With that being said we pay for commercially developed cells every day. Why should the tissues of humans be worth any less?
I believe a patient should be only compensated when and if the actual tissue becomes commercialized. If the tissue is used for research purposes only and is passed between labs without profit, there should be no patient compensation. Likewise if the tissue is used in academic research to develop a tool (diagnostic, therapeutic etc.)
However, if someone starts to sell the actual tissue itself, at that point it is appropriate to both inform and compensate the patient.