Ethical debate: Patient consent and medical progress

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The interwebs are abuzz with glowing reviews for Rebecca Skloot’s new book “The Immortal Life of Henrietta Lacks”. I’m currently #37 on the library reserve list (sorry, Rebecca, but I’m a poor grad student and I can’t afford to buy it). The book tells the story of the HeLa cell line, which are cells that were taken from a patient without her consent. These cells have led to important medical breakthroughs. But how isolated of an incident is this?

As it turns out, things like this are still happening. Just last week CNN.com had a story entitled the Government has your baby’s DNA.  Most people are aware that newborns in this country are routinely screened (which is not diagnostic and has a high rate of false positives) for a variety of genetic diseases. While some object to this testing, I think it’s a great idea because early recognition of a disease may be key to treating it. These tests have saved or improved the quality of many lives. For example, testing can reveal if a child has PKU, and if the child eats a specially formulated diet, the disease can be easily managed.  This policy is largely considered to be a public health success story, and I endorse it 100%.

However, some of the samples taken from newborns for the purposes of genetic disease screening are saved and given to medical researchers. This has some privacy rights advocates up in arms.

Why should you care if someone has access to your DNA? The information encoded in your DNA contains the most intimate health secrets about you, and it can easily be used by unscrupulous individuals against you. For example, your propensity for many diseases can be determined from your DNA (indeed, that’s what this screening program is all about). Many privacy rights advocates are concerned that if this information fell into the wrong hands, it would affect a person’s ability to get health insurance (and by extension, employment). Though that sounds like a paranoid rant, it has already happened. In fact, it happens a lot.

A 1992 NIH study found “Stigmatization, and denial of services or entitlements to individuals who have a genetic diagnosis but who are asymptomatic or who will never become significantly impaired.” People have been denied health insurance not because they show the symptoms of a disease, but because their genetic code shows that they might someday manifest symptoms of that disease. It is important to note that security procedures in place make it extremely difficult (as close to impossible as any real-life situation can ever be)  for an insurance company to gain access to a person’s genetic samples in this particular case- the samples are supposed to be completely de-identified from the people they came from.  We’re talking about bloodspots in a fridge with no name, birthday, or identifying number. The program is HIPAA compliant.

No one’s consent is sought when their baby’s DNA is stored- in fact, people usually aren’t even informed. However, researchers have made many important and potentially life-saving discoveries from these samples.

I believe that while saving lives at the expense of someone’s privacy rights may be something that people will agree to, doing it without asking permission is completely unacceptable from a research ethics standpoint.

Just to be perfectly clear, I support genetic disease screenings of newborns because it saves lives. My objection is to using genetic material left over from these health screenings for other research without the consent of the patient.

And now we get to the ethical debate.

Am I being overly paranoid?

Do you think that it is ok for scientists to use someone’s genetic material without asking their permission (keeping in mind that their research saves lives)?

Would you provide consent for your DNA to be used in such a study?

I am not interested in the current laws and regulations concerning informed consent. I am interested in what you think is right and wrong.

~WhySharksMatter

  1. I think that medical consent should be necessary. I am sure they would get enough people that would voluntarily donate DNA for science….but to take without permission is wrong.

    • I completely agree with Steffi:

      If people were informed more on the topic, I am very sure they would love to help in the field of medicine and the field of science by simply allowing researchers to keep a tiny sample of their baby’s DNA. If that’s all it takes to save other lives, why wouldn’t you? Heck, it seems even easier than donating blood.

      Taking someone’s DNA and using is without expressing to them the situation first is, in a sense, stealing. This is wrong and should not be supported or allowed by any means. Fortunately, these “thieves” are using the DNA for good.
      I am very interested in medicine and fully support its progress. There is not a single thing wrong with this process besides the lack of communication between researchers and patients. If more parents were introduced to this idea at the beginning of their pregnancy, I’m sure they would in fact allow their child’s DNA to be used for research. It might end up helping them and others in future generations in the long run.

  2. I have been working on my master thesis in the cancer field for the last two years, and as much as we (researchers) need and want samples and DNA I still think people need the consent. The question that came up during our stem cell seminar is what do people consent for. Do we just give them a blanket consent form which would allow us (researchers) to then use their cells for anything? Or do we make it specific and then re-consent them after a certain amount of years or if the procedure changes?

    What I know is that most cancer patients will gladly donate samples, blood and DNA in the hope that a cure might be available to the next patient.

  3. As far as the law is concerned, if you have tissue removed from your body, it’s considered trash and the hospital can do whatever it wants with it. Unless you specifically state that you don’t want your tissue used, you have no rights regarding what happens to it. The only right you do have is to privacy.

    If you get an appendectomy, the hospital can keep your appendix, but they can’t reveal who it came from.

  4. Too many parents think it is impossible that their child would have a genetic disease or that they have no risk factors – if we can’t trust parents to vaccinate (or at least to distinguish between Jenny McCarthy and real science), we can’t trust them to test. I realize that sounds inappropriately paternalistic, but I am the parent of a child who died from cancer caused by a rare genetic mutation. If they tested for it, and we had known, we could have started treatment earlier and potentially saved her life. We had no risk factors, no indications, no expectation of this happening. We might have denied permission, as would many – out of the same misguided principles that result in people preferring tree bark shaman treatments for cancer, avoiding vaccines, and so forth.

    Furthermore, about 30 children a year in the United States are diagnosed with the disease. It was only identified about 10 years ago. I suggest you come look me in the eyes and tell me that it should be MORE difficult to do research on rare pediatric diseases. You could do this next Wednesday February 17 – the first anniversary of my daughter’s death. Thirty children a year, most of whom die before reaching 1 year old. It’s NOT GOOD ENOUGH for merely ‘most of’ those parents to consent. I have provided my own DNA, my husband provided his, and we provided my daughters – to cancer researchers at two hospitals, including St. Jude Children’s Research Hospital. We donated my daughters remains for further research, further tissue sampling. Because goddammit less children need to die, and if squeamish healthy people who have the liberty to feel unmotivated about research don’t like it, too bad.

    There are already federal laws prohibiting employment and health insurance discrimination based on these results. It is called the Genetic Information Nondiscrimination Act, went into effect in May 2009. Perhaps the law should be expanded, and with good reason. But in my opinion the testing and research should be expanded, too.

    • “less children need to die”- I think you’ll find few people who disagree with that.

      “and if squeamish healthy people who have the liberty to feel unmotivated about research don’t like it, too bad.”

      This makes me uncomfortable. The ends don’t always justify the means.

      I am truly sorry to hear about your child, but I don’t think that justifies using people’s genetic samples without their consent and knowledge.

    • Well, I don’t think privacy protection is more important than life. You see it as a means end analysis, and I’m willing to talk in that rubric but I’m going to turn that right back around. The “end” of privacy protection doesn’t justify the “means” to achieve it, which is limiting research on serious diseases. Not when state and federal laws already prohibit the use of the information to discriminate.

    • Mary, part of the bigger issue here is where the line really is, sure you could argue that when doctors took a biopsy of Henrietta Lack’s tumor and then used it to establish a cell line for research without informing her, that ultimately served the greatest good, but certainly not for her family.

      What about the Tuskegee Syphilis experiment where doctors chose to let poor black men die of syphilis so that they could study the disease, even when they had a cure for it? Without every telling the patients they there were going to let them die. It’s not just about privacy, it’s also informed consent, making sure your patient knows exactly what you plan to do to them. And if a patient isn’t comfortable giving consent, too bad for you.

      Human rights are absolutely as important as being alive.

  5. Just a disclaimer, I work on a labor and birth floor, and I’m writing a thesis on the importance of informed consent in obstetrics, so you know I’m biased. But I still don’t think there’s a story here.

    A few points:

    All states except South Dakota allow parents to opt out of the program.

    The analytes in the dried blood destabilize in a matter of weeks to a few months. Only one state keeps the samples cold enough to be viable over years, and only two analytes remain viable even then.

    I’ll email the program guidelines for storage and research use of the samples to anyone who wants them, it’s pretty enlightening. They primarily hold onto them because of fear of lawsuits. And the expense involved in proper disposal. Given the federal regulations involved, sometimes it’s cheaper to toss something in the fridge indefinitely than to hire the proper people to cart it away. Hell, the public clinic I volunteer at has a fridge full of urine because the funding isn’t there to get rid of it.

    • “Allowing parents to opt out of the program” requires that parents are aware of the program. Doctors don’t tell them about it.

      This reminds me of the Hitchiker’s Guide to the Galaxy- perhaps we could have stopped the Vogons from destroying Earth if only we had known that the plans for the new hyperspace bypass were on display on Alpha Centauri, but no one told us that they were there so we couldn’t do anything to stop it.

    • I agree, consent to every instance of sampling would be great in an ideal world where health care providers had time to explain all the ins and outs of a complicated system. The truth of the matter is this, if medical records and samples weren’t routinely used for research, blessed little research in medicine would occur. That’s one of the reasons why HIPAA exists, and why you have to sign a form saying you understand HIPAA and your medical privacy rights every time you go to doctor, hospital, dentist etc. The fact that most people don’t read the forms, or bother to understand their rights, does not make this a huge ethical failing on the part of medicine. There are plenty of other huge ethical failings within medicine that need some light shed on them, but this is not one of them.

      My major concern is that the CNN story (and this post by extension) takes a practice that is common, adds in a “we must protect the newborns” component by focusing solely on the newborn screen, and then sensationalizes it with the fear of “Lord knows what the government might do with all that DNA.” It’s very manipulative, and an easy story to sell, especially in our society where suspicion in regards to science and public health is very common. We really do not need to be encouraging or enabling a phenomenon like the immunization debacle.

  6. Why wouldn’t doctors ask for informed consent? If the parents were informed of the screening (which they should know about anyways, it’s not exactly a secret) and about the need for the use of the blood for research, most parents would give the okay.

    I think you may be missing part of the story– why would they neglect to ask?

  7. Got to sign on to the consent bandwagon on this one. If you need samples for life-saving research, then you need to convince people to give them up of their own free will (or closest reasonable facsimile thereof).

  8. It’s easy to argue that yeah, of course informed consent should be acquired in all cases, but at what point do you actually forfeit ownership of your own body? Sure, you can give or refuse consent for a blood sample, but what about a hair sample? What about a hair sample from the floor? Do you have to get informed consent before getting DNA from skin cells that have already sloughed off? What if they sloughed off at a crime scene?

    What if you consent to a biopsy, but don’t want the data from the biopsy used for anything but to treat you? Does the hospital have a responsibility to give the tissue back to you? If you have a spleen removed do you still own it, or is it something you’ve discarded? If you throw out your trash, it’s perfectly moral for someone to pull it out of the dumpster. Why is it any different with your tissue?

    • You forfeit ownership at the same point you forfeit ownership of anything: when you give it to someone else or throw it away. If you get a biopsy, and only want it used for one thing (to test for disease, for example), then the consent forms should be clear, and all rights not explicitly allowed therein are reserved by the person from whom the biopsy was taken.

      It should be like intellectual property: ownership is assumed to belong to the creator (grower?) until you have specific documentation demonstrating otherwise… only we shouldn’t allow people to be strong armed into signing away their rights (which we do in copyright, but that’s a different issue).

  9. I think that as long as people have something to complain about, they will. What fascinates me about this type of media BS is that they make non-medical individuals think that current medical practices have perfected cloning or can somehow steal a bank account based on a tiny blood spot from a newborn; both are gross misrepresentations of what is actually done with the blood and what is even possible in today’s world.

    That said – vaccinations have long helped erradicate diseases like polio, measles and smallpox (in this country) and mandatory testing/treatment in emergency rooms nearly did the same for syphilis. Do people complain when these things were/are done for the greater good of society? No.

    Human beings by there very nature are selfish, I personally am no exception. When it comes to the question asked at the beginning of this blog re: “what is morally right/wrong,” it is not quite so straightforward given the context in which it was phrased.

    Allow me to expand on this: the consent obtained for the above mentioned screening exam is implicit. The reason it is implicit is because no self-respecting parent on the planet would choose to “opt out” of having their child screened quickly and efficiently for a myriad of illnesses which have the potential to be devastating but are also relatively easy to treat (with some exceptions). Moreover, because it is something that is done in the best interest of the patient, even if a parent chose NOT to have this test done, there capacity to make decisions for the patient would be thrown into question and ultimately would become a huge legal battle, in the interim, laws would be created removing the rights of parents to make healthcare decisions for their child who clearly does not have capacity to decide for his/herself.

    Now, since we have established that the consent is implied and the sample has already been obtained; whatever the lab/tech/physicians/researchers decide to do with it, as long as it does not violate the hippocratic oath, is both morally sound as well as outside of the control of the individual who has already consented to giving their blood. It would be like a racist going to the red cross, donating blood and then saying “I don’t want any (fill in the blank race) getting the blood i just donated.” Not only would it be immoral, it would be idiotic.

    The simple fact that I have responded to this thread in such a meandering manner says that not only do the media mavens have way too much time on there hands, but apparently, so do I.

    `peace out

    • I am disappointed so many educated individuals would give a thumbs down to a perfectly well crafted response to an intriguing question. Do enlighten me, was it the content or the fact readers felt insulted at the end?

      Deeply saddened by the lack of intellect.
      A Sadist

    • Didn’t realize the dislike threshold was set so low. I’ve increased it to 5. As to why 3 people didn’t like your comment, I have no idea but imagine it probably had less to do with content or feeling insulted and more to do with the fact that it’s so unclear that I honestly have no idea what point you’re trying to make.

      In case you’re wondering, I gave the comment immediately above a thumbs down for assuming that anyone who didn’t like you comment must lack intellect.

  10. Allow me to attempt a re-explanation then … and again, I’m disheartened that people are so emotionally reactionary, but then again, I suppose I shouldn’t be surprised.

    In summary –
    1) There is no need for consent regarding the neonatal blood spot screening test because it is a state mandated exam. while this differs slightly from state to state, in most places it’s mandatory – as it should be since you are looking out for the best interests of the patient (the newborn) and not the parents who may not have a rational reason for wanting to “opt out.” For those of you out there that have a rational reason, do share.
    2) Because you are sampling only blood and each sample is declassified after initial screening tests are performed, the testing which goes on when the “left overs” are studied by researchers has less to do with anything aimed specifically at the individual it was taken from and more toward developing new technology to improve current methods/practices. That said, I will ask what specific concerns people have re: the use of the blood in this fashion?
    3) The first point I made in my reply earlier was that many times in medical history practices have been implemented that do not require consent and are done so for the “greater good” of society. This exam is no different, so why is it people are angered by the newborn screening exam’s lack of consent? With regard to the Tuskegee experiment, the medical field has made great improvements in what can and cannot be attempted and most every study has to go through an Institutional Review Board before being conducted, what studies go on with the newborn samples is no different, rest assured there are plenty of legal and ethics experts that sit on these panels.

    The bottom line people is that when the media has an opportunity to strike fear in the hearts of American’s it will do just that, all to make a buck. None of you should believe anything you’re told until you have supportive evidence.

    Finally, please educate me regarding how newborns are protected by NOT screening?

    • Nobody is talking about not screening. Nobody. You are intentionally misrepresenting our words to make yourself sound more reasonable. Screening newborns saves lives and is a great public health policy success story.

      The issue is that some researchers take leftover material from these screening tests and use it for additional research without the consent (or knowledge) of the patients or their parents. The fact that you don’t see a problem with that does not mean that there isn’t a problem with that.

  11. I thought that you were looking for opinions w/explanation – i provided an opinion, i’m not saying it’s right; i’m just looking for some dialogue.

    So expound on your statement “does not mean that there isn’t a problem with that…”

    1) may i please have a specific example of where this is occuring and what type of research exactly you are referring to?

    2) please refer to my original number 2 and provide a reason why this is concerning?

    3) if you read a consent then you know that by giving up your tissue, cells, dna, etc in any form, you basically are saying it’s no longer yours; stated differently, if you give a doctor your blood or tissue, you don’t get to take it home with you, it is technically no longer your property

    4) please explain why the patients and or their parents need to know about the additional testing? Does it affect them personally?

    • Informed consent, yo. Consent given without full information is invalid. Over-the-top example: Say I ask you “Hey, can I have a pen? I need to sign this form to get money out of the bank.” Sounds reasonable, right? So most people would hand over the pencil. If I sign the document, then stab someone in the eye with it, would that person have a valid reason to be upset? Once they hand it over, it’s no longer their property, right? Why do they need to know about the additional use? Does it affect them personally?

  12. Fascinating example. It’s flawed for at least two reasons, one – your example involves taking something and then using it to intentionally harm another individual. (Where is the harm being done to the newborns or there families?) And two – this is a verbal consent; every informed consent obtained in a hospital is a written document and if people want to read the whole thing, will realize exactly what they are disclosing/giving up or agreeing to.

    I’m not sure that it applies, but I would say, why not go a step further and make people sign paperwork for owning guns … after all, the person selling the gun has no control over what the buyer does after making the purchase.

    Ultimately, it sounds like you just want to live in a world run by lawyers where every action we take is preceded by some kind of contractual obligation with full disclosure.

    Should McDonalds, Burger King and Coca Cola have to provide an informed consent prior to someone purchasing and consuming there products stating that they’ve informed you of the adverse health effects?

    How about intellectual property? Does every conversation you have with someone need a confidentiality agreement signed to prevent them from repeating something you’ve said and pretending as if it was there own?

    • 1) “Where is the harm being done to the newborns or there families?”

      The same place as the harm done to the person who gave me the pen: there is none. Would you be upset that I used the pen I obtained from you in that manner? Something tells me that you would, and moreso than merely from stabbing someone in general, I think.

      2) “this is a verbal consent”

      Pretend there’s a contract that says in writing that I will use the pen to sign the withdrawal slip. I fulfilled the letter of the contract, there is no violation. Why are you so upset?

      Remember the part where you said refusing consent is wrong? You advocate forcing people’s consent here, because it’s tacked onto a contract for something required for different reasons. If you’re allowed to go through line-by-line and veto parts of the contract, sure, but you really aren’t. Even if you were, you’re not a lawyer, and will probably screw it up if you try. Even if you were, what if you have an emergency appendectomy? There’s no paperwork to sign, you’re dying on a table and they have a matter of minutes to remove the broken part. Can they just use that for research without your knowledge or agreement, too?

  13. Your not being overly paranoid. Actually, you have brought up a point that many people including myself have never even thought about. With todays economy and the extreme lack of health insurance by many Americans and the many schemes that health insurance companies have to deny a patient coverage I would not be surprise if insurance companies arent already trying to scheme a way to get personal information as DNA on many of their clients. (Not getting into the whole health insurance issue) but we have to consider loop holes as such when dealing with insurance companies. I am actually glad that you brought this issue up.

    Do you think that it is ok for scientists to use someone’s genetic material without asking their permission (keeping in mind that their research saves lives)?I dont think that it is ethical for scientist to do use any of someone personal information including their DNA without their permission. I am sure that with the mention of “saving a life” people would be more than happy to allow them to use their DNA in their studies. I know I would. Being sneaky and using people’s DNA without their permission just makes it look like they are doing something wrong and thats when it becomes a problem and unacceptable. But if asked permission, I would gladly allow my DNA to be used and hopefully be able to help save someone’s life maybe even my own.

  14. I don’t think you are being overly paranoid either. I think that consent should be necessary for the use of someone’s genetic material. Although I understand the extremely beneficial effects of having these samples is saving lives, I do not understand why they can’t continue to save lives with the approval of the patient. This would allow researchers to use the samples without any concern for breaking privacy laws. It is absolutely unethical for a doctor or researcher to take something from a patient without their consent. We sign a million pieces of paper at the doctor’s office for a reason. There are more than enough people in this world who are willing to provide samples in hopes of finding life altering cures. I know I would be willing to help if a doctor asked my permission. It’s not like I need these samples, I have a million! By not telling the patients and families it makes it seem as if doctors are hiding something that they should not be participating in. By giving consent it makes it a win-win situation for patients, doctors, and future people who may need the cure that your or my sample may have provided.

  15. I think the first issue here is the fact that people just don’t know. Most of us don’t even know to ask to begin with. I know for me at least, this is new information. Not only did I not know the purpose of keeping the DNA, but I was unaware that it was even being kept. I think the public should be made aware of this situation immediately because even if the use of it doesn’t bother them, they should have the right to make that call themselves.

  16. I believe that people should have to give consent if scientists want to use their DNA. I understand the legal aspect that after it has left your body it is consider waste and it is better to use it for scientific purposes then to throw it out However, I still think since it is a person’s bodily fluid it should be left up to the individual as to what will happen to their unused sample. For example one thing that needs consent is organ donation and quite a few people have agreed one they pass away their organs can be donated for medical science or for people who need organs. To me organ donation and the way a person’s left over DNA is used are not that different. I believe that consent is needed because I think if scientist don’t request consent and especially if people are not informed about the usage of their DNA, then I think in a way scientist are infringing on a person right as to how they what their DNA used. Also what is to stop scientist from not informing individuals and requesting consent for other medical procedures? People tend to have strong beliefs when it comes to medical procedures and uses of disregarded samples. In medical circumstances I believe that scientists should accepts everyone’s personal belief or opinion and request consent.

  17. I don’t think that scientists should be allowed to just take your DNA with you not knowing/without your permission. It is yours, and if they want to take it they should ask. I do know that they are taking your DNA because they are using it for medical purposes, but still I believe that they should ask before they take it.
    Being from a family who is prone to cancer, I think that it is important to take DNA from people so that we are able to test and retest until we find a cure or answer. If taking DNA from people while they are being screened helps us find a cure, its important that we continue doing this. But, I do believe that it should require consent from the patient.

  18. Although parties from either side of the spectrum could both maintain a considerable argument to defend their end of this moral debate, there is no arguing that obtaining an individuals DNA for Research without their knowledge is anywhere near acceptable, let alone moral, even if lives are being spared along the way. Given the worlds population, 6,692,030,277 in the 2008 census, there is little argument that testing samples are a rarity. With past trends in mind, plethora’s of people have always been willing to contribute in any capacity to further advances in scientific understanding; why not continue to give them the option to do so?

  19. While genetic disease screenings may save the lives of newborns, I think that it is unethical for doctors to pass on genetic information to scientists without permission. A person’s DNA is private information that should not be experimented with unless that person has given his consent. Your body belongs to you and only you decide what you want to do with it. I do not think that it is ethical for scientists to use any part of someone’s body, including a sample his DNA, for their own research. However, I think that if a person gives his consent, then it is fine for scientists to use the person’s DNA for further research. Personally, if my DNA would contribute to any scientific studies, then I would give my permission for it to be used.

  20. I guess I’m here to be the devil’s advocate. I think there is nothing wrong with scientists using someone’s genetic material without asking for permission because its more important that lives are being saved. We give up rights all the time for safety. It’s not like its being used for a negative reason. The purpose is to do research and contribute to the knowledge of our human race. Like most things, there is a Catch-22 situation. If the genetic material is passed on without consent, insurance companies can use it against an individual if it appears to be an issue in the genetic material. I feel a resolution to this issue would be to send the individual a note informing them that their “left-over” genetic material is being passed on and if they would like to appeal the decision, they could do so. I personally would provide consent for my DNA to be used in a study because the end result is the most important to me.

  21. This is a subject that I had to really think about before I could formulate my response. On one hand, someone’s DNA is theirs and it is such a huge part of them. It unlocks so many mysterious to their body and like said in the article, if the wrong person gets a hold of this material it can cause problems for it’s owner. On the other hand this genetic material could unlock many doors to treating various diseases and helping unlock many questions about how DNA works.

    Although DNA is such a huge part of an individual, when one is at the hospital and they have collected one’s DNA in some various form why should it matter what they do with it? Wouldn’t it be better to put it to use for research than simply throw it away?

  22. I don’t think that medical professionals should be able to take your DNA without your permission. Its your property, and if they should have to ask before taking. I am not sure that they are taking DNA for medical purposes, but I know they should ask before using it.
    I feel like the uses from the benefits of taken DNA could have great outcomes. It could be used in the advancement of medicine to cure things like cancer. It could be worth it, but in the end you have to consent.

  23. I think medical consent is always necessary! I believe its not right and unlawful to take someone’s DNA without their permission and then later on could be use against them for denying health insurance and losing their job. Then they also can be cloned without even knowing it n the next decade because cloning is still a progressive research being done everyday. Less babies need to die and the screen of the baby at the beginning finding diseases is very effective strategy that help the baby live and manage any disease they might have obtain.

  24. From a younger generations view point who has yet to have a child, I can still say I do feel the screening is a necessary action that needs to continue to take place simply because of the fact that it has and continues to save many lives. This screening has been able to catch a deadly or critical disease early on, which then enables us to have the possibility of maintaining or regulating the possible negative effects of that disease. However to keep this DNA long after the screening is cleared and have scientist do studies on it without the parents or child knowing is not only invasion of privacy but in my opinion its Identity theft. Even if the DNA has no diseases present or has genes that might lead to having the ability to save others lives with a little research, I still feel it is a serious matter to take and use the DNA of another human without their consent.

  25. In response to this statement by Southern Fried Scientist…

    “What if you consent to a biopsy, but don’t want the data from the biopsy used for anything but to treat you? Does the hospital have a responsibility to give the tissue back to you? If you have a spleen removed do you still own it, or is it something you’ve discarded? If you throw out your trash, it’s perfectly moral for someone to pull it out of the dumpster. Why is it any different with your tissue?”

    In an earlier statement, before this one, you stated, “It’s not just about privacy, it’s also informed consent, making sure your patient knows exactly what you plan to do to them. And if a patient isn’t comfortable giving consent, too bad for you. Human rights are absolutely as important as being alive.”

    So, why all of a sudden are you questioning how your left over tissue is any different from the trash in your dumpster?

    Personally, I do not think that the hospital would “have a responsibility” to give your tissue back to you. In a consent form, you would not sign to get your tissue back, but you would sign for them to only use your personal tissue to treat/test you and only you. It came from your body, it belongs to you. Regardless whether or not it is inside of you, it’s yours.

    So yes, if I had my spleen removed, I would still consider it my own. Chances are, I removed it for a reason, and that reason was mostly likely not by choice. The only time I would consider an organ out of my own body “discarded” is if I was dead and I had given CONSENT to donate them.

    And technically, it is not PERFECTLY moral for someone to pull trash out of a dumpster if the dumpster belongs to you. “Dumpster diving becomes a crime when someone steals your garbage that is considered to be concealed like when it is located at the back of your house or inside your garage. They are still, technically, your own private property because they are located within your premises.” (http://ezinearticles.com/?Dumpster-Diving-101—How-to-Protect-Yourself-From-Identity-Theft&id=4173039)

    So in my personal opinion, I do not think that it is ok for scientists to use someone’s genetic material left over from a health screening for other research without the consent of the patient. I am sure that it has saved a lot of lives, but what ever happened to saving your own? “Human rights are absolutely as important as being alive.”

    So why would I not have my human right to say NO to this procedure?

    • Because at some point there is a line where you forfeit possession of your discarded tissue, or is there?

      If you leave blood, skin cells, hair follicles, or any other tissue at a crime scene, the police can take it, database it, use it to identify you, and then convict you. So obviously there’s a point where you give up possession of your genetic information.

      And guess what? You don’t own your organs once they’re removed unless you specifically ask for them back. Most of the time they go to medical schools for training, sometime to labs with specific goals, but as far as the law is concerned, the only responsibility the hospital has to you is to not identify who the tissue came from.

      Don’t conflate dumpster diving with trespassing. If you throw something away, it’s trash. Anyone can dig through a landfill and claim it.

  26. I do not believe you are paranoid. I agree that it is ok to screen newborns. I don’t think that genetic material left over should be screened without the patients consent. I believe that if scientists ask to use peoples DNA and tell them what they are testing for then people will agree to use it. I’m not saying that everyone will but a lot of people will agree to it. I think DNA should be screened to help save lives of humans. If a scientist asked me to let them study my DNA I would give them consent but I first would want to know what the scientist were going to study before giving consent.

  27. I believe that it is unethical for anyone to take DNA without their permission. As a parent, I understand how much genetic disease screenings could help, but taking it without the knowledge of the parents is absurd. There are many forms to fill out and sign when you are admitted in to the hospital to give birth. It seems as simple as adding in another form that gives parents the option to opt in or out of DNA sampling of their newborn child. The behavior of doctors passing on genetic information to scientists without parental consent seems as if there is an ulterior motive.
    The idea of insurance companies using the results of the testing to have the power to write or not write health insurance policies is not fair, especially if consent isn’t given to release a person’s identity. I do think that a line is crossed when researchers have identities tagged to the blood sample and this information can impact someone’s life negatively. However, if genetic sampling can save lives, and I was given the option to consent, I would.

  28. I would be less concerned about the donation of genetic material if genes were not allowed to be patented. Why should I donate my material “for the greater good” to only discover that the therapies created from that material are only being made by one pharmaceutical corp. – the one that received a patent for the gene. I’m not suggesting that there shouldn’t be a return for the research investment, but not to the exclusion of other research that could save lives.

  29. I agree that patients should be asked whether they would like to donate their DNA or, more specifically, whether they would like to donate it to research. I understand that DNA is often taken for different tests, but it is a part of that individual. He has the right to know what exactly it is being used for. Yes, he knows it is being used to test whether he is positive or negative for a possible disease, but he should have the right to know that it will be used for other research or, for that matter, the right to give consent for its future use in research. I would like to know whether or not my DNA was being used without my consent because it is mine and no one has the rights to it other than me. In the case of infants, the parents have the right to consent or refuse the use of their child’s DNA in future research.

  30. I just think the whole thing is scary. No, I do not think you are being paranoid but realistic. At the given time people may not think about these things; they just think they are doing a favor for science. I am all for consent;not having it is unethical, point blank. Being a psychology major (with the interest and the greatest respect to biology!) the need for consent is there for a reason. In addition, as part of the consent there is the greatest need to really explain what may or may not happen instead of just letting them read the fine print.

  31. Scientist should get a patients consent before using their DNA. Lives will be saved whether consent is given or not so just go the extra mile and have a patient sign consent forms. Most people will not hesitate in giving their DNA over for scientific research. We would all like to see more leaps in medicine and research would make this achievable. Being the child of a parent who battled cancer, I would want nothing more than to see a cure. The public needs to be well informed of what their DNA would be used for and if necessary have another law passed making it virtually impossible for anyone to get a hold of patient’s information. It seems that researchers are afraid they would not get enough people to consent meaning they would be unable to do further research. Informing the public of the benefits of medical research seems to be a means to this end.

  32. Not being paranoid at all, just realistic. If these insurance companies do have access to the DNA whose to say they will not screen/profile employers for their own benefit? Screening at birth is an entirely different (and beneficial) issue. To store this DNA and use it WITHOUT consent of the person to which it belongs is utterly unconstitutional.

  33. As you said, the information people give researchers could be used against them, so, shouldn’t we be allowed to decide whether or not we want to take that risk? It is true that sometimes people get scared when they ask for their genetic material because they are afraid of what scientists could do with it. It is a given that fear can take total control over people; I totally understand that people get scared, when I have to give personal information the first question that comes to my mind is, what will happen with this information in the future after they are done with this study? Also, answering to a question posted before about whether or not the consent people give should allow scientist to use the genetic information for further studies, I would say that the consent should be specific. In other words, people should be able to re-consent if they want to use their information for other studies. Even though data is essential for developing better studies, researchers should give people the option of choosing whether or not they want to share their personal information and for how long, and this is why consent should be given when requesting certain information.

  34. To me the idea of screening newborns for genetic diseases and hospitals then storing extra DNA without consent should be treated as to separate issues. After all, the potentially life saving act of genetic screening does not depend on the hospital’s ability to hold onto access DNA. I’m sure most people will agree that genetic screening is a great medical advancement that should be taken full advantage of. How can you argue with a method that saves lives? On the other hand, I find it completely unethical for hospitals to keep DNA without the patient’s consent. If DNA is a scarce resource needed by scientists and members of the medical profession then it should be approached in a similar way as organ donation. I feel confident that a lot of people would consent to the storage and future usage of their own or their newborn’s DNA if it is indeed kept without names as stated. Perhaps even a small incentive could be attached to agreeing to donate one’s DNA, much like platelet donation. The bottom line is it should be their choice.

  35. I would not have a problem consenting to have my DNA tested. However, I am a stickler for privacy, and what exactly is more personal than your own chain of DNA? Written consent is a must here.

    I can see why others may find this trivial. It has the possibility of being instrumental in discovering traits and treatments for diseases. But how does the right to privacy stack up against the possibility of saving lives?

    • Yes, privacy is essential but shouldn’t there be exceptions when new health breakthroughs are involved? You do state a valid idea but why should health professionals be declined access to testing our DNA if something good can possibly come out of it?

  36. My love for jelly donuts could, God forbid, be used against me. In fact, my love for small woodland creatures could be taken out of context. However, DNA is not a jelly donut, and nothing is more private than one’s very essence. There should be laws which protect our information and which penalize any party which is found to use our private information without consent. It’s that simple.

  37. I completely disagree witht the idea of taking DNA without someone’s consent. I don’t understand why is it so secretive to do such things that are used for the greater good. If it is such a major ordeal that is moreso beneficial then why shoud it be done without the patient’s permission? Doing against one’s will does bring some slight concern to me, as if there is something more that we have no idea about. Perhaps it should be regulated similarly to organ donors. Just as we are asked to give our consent on whether or not we want to give our organs to science as well as situations similar to bone marrow transplants. Everything should be documented and done under the will of the patient. As for DNA of newborns that as well should be medically regulated and given full permission from the parents. Everything done privately is ILLEGAL regardless of how it may benefit health issues!

  38. If someone does something good for you (like save your life or the life of someone you love) and does not notify you how they did so, are you going to be mad about that? I agree with David that this is a good policy to have, although people have become very skeptical and weary of this. Privacy is a privilege we have in this country but that may just be an illusion. The Patriot Act allows the government to tap any phone line and listen in on your conversation and read emails, etc. Taking DNA to help save lives is similar to the Patriot Act in my opinion; in the prevention of another terrorist attack. I agree because I don’t have much a choice and the likelihood that I die because of it is less likely. As long as scientists use left over DNA in an ethical manner I do not have a problem with it. Even though the fact they take it without consent is unethical, what they do with it is more important to me because my objection is not going to stop them.

  39. It really sounds as if one man’s trash is another man’s treasure. Bottom line, consent should be mandatory with any such medical research involving an individual’s DNA. Other than those who are intensely private with such matters, it doesn’t seem that that many people would object to offering their DNA for all of these scientific benefits. I just don’t understand why it needs to be done without their consent. While using an individual’s DNA for research may have little to no negative consequences, I still think that these individuals have a right to know what exactly is being done with their DNA, and where it’s going to end up. Genetic Information Nondiscrimination Act protects peoples’ identity as well, so there doesn’t appear to be that many reasons, other than lack of informed consent, as to why people wouldn’t donate their DNA to science.

  40. This debate is interesting because you are right, while I do support the screening of babies to save lives, and I do support the furthering of genetic research, I do not support the non-disclosure policy these doctors seem to be adopting. With all of the paperwork you fill out at hospitals these days, it’s hard to believe that they don’t just slip in an extra forming asking for consent to study leftover materials. I agree with Annes post in the sense that there are surely many people that would agree to this, if not for the fact that it could save lives, but it would just be another consent form to sign. I think the fact that researchers are not disclosing the facts about using people’s blood and DNA, would make many people uneasy about the topic and start to ask ‘What are they really doing with my blood and DNA?’ Of course there would be people that would deny consent to the use of their blood and DNA, but shouldn’t that be their choice? Just as it is our choice whether or not to become organ donors, we should have the right whether or not any other parts of us are used for science. Also, the bit about health insurance being denied due to blood sampling is even WORSE! With stories like that coming out, researchers are going to have a hard time getting consent from anybody, which is why consent forms need to be drawn up, in order to protect the rights of the patient from health insurance companies.

  41. Taking this kind of valuable material without a patients consent is unethical, it is an invasion of privacy and technically considered stealing. Although, if it could never be traced back to you, insurance companies could never get their hands on it and you never knew it was taken in the first place, would it matter? I do not believe that this a practice that should be done because taking someones personal genetic material is definitely an invasion of privacy, but if it were to save someones life and no one ever knew it was your DNA, I wonder if it really matters if it’s unethical. I feel like you can really run yourself in circles around this topic.

    I do support genetic disease screening on newborns and I’m sure that if the scientist explained to the parents that the genetic material they had left over from the screening, could potentially save someones life and could never be traced back to their baby, they would most likely give their consent to its use. I mean who wouldn’t? If it is going to be considered trash and be thrown away, why not put it towards saving a life. I think that any reasonable person would feel that way. In the cases where genetic material is left over from other diagnostic screenings of adults, I’m sure they would give consent too if the situation was explained to them. As long as the genetic material they give can not be traced back to them through a label, then again, why not try and save a life?

  42. I know you said you aren’t interested in current laws, but im actually in a baby delivery room now. The nurse said they don’t do this any more in the state of SC because in all 4 years of having stored DNA they did not use a single one once. Also, apparently we had something on the patients form of yes, no, and to destroy. Now in SC they destroy the DNA