Henrietta Lacks and the changing face of informed consent

I had the good fortune of spending a woefully-insufficient amount of time with author Rebecca Skloot at ScienceOnline10 last weekend. Rebecca has worked for the last decade on a remarkable book which is being released next month, but thanks to a quick hand on the keyboard, an active twitter account, and a glass of Merlot (don't ask) I have an advance copy. (I had already pre-ordered one, which I will likely give away in some sort of selfless act of tzedakah.)

The book is called The Immortal Life of Henrietta Lacks and documents one of the most important discoveries in modern biology and the people who made it possible---even when they didn't know it.

Which brings me to the topic of this post. I haven't finished the book yet, but it's terribly hard to put down. I love non-fiction, and this is the best I've read in years, both from a content and style perspective. Rebecca's prose is entirely engaging. Skloot manages to capture the humanity of the people involved in all its flawed glory. So far, there are no saints, no demons; just people.

One of the most engaging characters is medicine itself. Medicine has changed much over the decades, and medical ethics with it, but not always as much as we would like. The previous norm in medicine was paternalism, that is, the doctor was seen as the authority and the patient ceded their autonomy to the expert who presumably had the patient's best interests at heart. It's not that paternalism in medicine no longer exists (it must, really) but the pendulum has, well, not swung, but been pushed toward patient autonomy.

As part of the move towards the protection of patients and the preservation of their autonomy, we explicitly inform patients about their care---and ask permission. Of course, we don't ask permission for every little decision in a patient's care, but neither are we supposed to implement major changes without their explicit, informed consent. To accomplish a goal of balancing autonomy with other needs, we have patients sign general consents to treatment, and specific consents for treatments that are more dramatic, such as surgery. These consents should explicitly set out the risks and benefits of a procedure and should reference a more detailed conversation that you have had with a patient.

To be clear, the act of signing a consent form is not the same as granting consent. Signing the form is only part of the process, the most important part being the conversation with the patient.  This is what honors the intent of "informed consent".

While we have probably not reached the goal of a perfect partnership between patient and physician (!), we have made strides. Here is the text of the consent form signed by Henrietta Lacks (from the book) before treatment for her cancer, a treatment which left her infertile, unwell, and the mother of one of the most important tools in modern biology:


I hereby give consent to the staff of The Johns Hopkins
Hospital to perform any operative procedures and under
any anaesthetic either local or general that they may
deem necessary in the proper surgical care and
treatment of: ______________________________.

For the sake of comparison, here is the text of a more recent consent form:

A physician has provided the following information to me: the nature and benefits of the proposed procedure treatments; the consequences of non-treatment; the significant alternative treatments; the possible significant complications of the proposed procedures.

I voluntarily consent to the procedure as discussed with my physicians...I understand that associates, residents or assistants may participate in my case.

I realize that medicine is not an exact science and that all possible outcomes/complications cannot be anticipated and that no promises or guarantees have been made to me...

I have had the opportunity to ask questions and I have no further questions of my physician.

There are significant differences between these two documents, and between how they are ideally implemented.  The most glaring difference is that the first document requires nothing from the health care providers, at least not explicitly. It is probably implied that they will give the best care that they can, but that is tied up in the context and the times.  The second form lays out explicitly some of the responsibilities of the physicians and explicitly calls on the patient to provide questions about their own care.

Ms Lacks grew up on a tobacco farm and had a sixth grade education.  She was black in a segregated city.  She had no real choices about her care because of this context, and the physicians of the time were not likely to have worked hard to mitigate that---it was not part of their culture.

Today we may still fail to get true informed consent---we aren't perfect.  But we at least strive for a more transparent system in which patients and doctors have both rights and responsibilities.

This intimate look into the past of the doctor-patient relationship has the potential to help us continue to improve the ethical practice of medicine. 

Thank you, Henrietta Lacks, for continuing to give of yourself in so many ways.


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So I have a little bit of an issue on this one.

On the surface I can see the difference between those two forms. Further, I agree with you that the real difference is (hopefully) how the consent is implemented.

Yet in my short experience, I've found informed consent inadequate. I've been in both a big university hospital and a big inner city community teaching hospital, and I've helped get consent, or observed doctors getting consent [as a student generally cannot obtain consent from a patient] and I've noticed a couple of things.

1. A large portion of patients really don't understand what they're signing, even when a doctor takes time to explain it - and many doctors really don't take the time to explain it. Honestly, most patients are sick, tired, scared, and even when they have lots of health related education, are in no position to be really making a rational decision here. Alot react by putting themselves in the doctors hands, kind of a paternalism by default. Some reflexively object to anything being done, more an uninformed lack of consent.

2. Because of 1, getting consent seems to often be delegated to an overworked, busy intern/resident, and it seems often to be an exercise in convincing a patient to sign the form rather than an actual exchange of information taking place.

WcT, everything you say is true and accurate.

There is an excerpt of the book in this month's issue of O Magazine. I had the opportunity to read it while at the salon getting my hair colour refreshed.

I am looking forward to getting my hands on a copy of the book so I can read it in its entirety. A truly fascinating story. I especially like a quote from one of her children which was at the end of the article, "As her daughter Deborah once whispered to a vial of her mother's cells, 'You're famous, just nobody knows it.'"

Hopefully through the publication of this book everybody will now know.

During basic training, I fractured my tibia and then ran on it for nine weeks. When I finally got home, I spent the next few years bouncing around the military health care system. It was amusing and annoying to have all these doctors (all officers) go through the "informed consent" routine with me given I was barely legal, seriously outranked, and in a system where if you refuse a treatment, like surgery in favor something like more bed rest, there's a tendency to brand you a maliger ( a crime in the military). So I wasn't going to say no, and felt it a waste of time, and an insult ot my intelligence to make me feel like I was empowered. By the end I was like, just fucking fix me.

I work with a very old-school, tell it like it is surgeon. The idea of informed consent is bothersome to him as it is. "Why wouldn't they trust me to do everything within my power to fix them and keep them alive?" which is as once naive and heartbreaking. I keep reminding him that not every doctor is like him and that because of dishonesty, laziness and whatever it is, people now put themselves into the hands of unfortunately unethical people sometimes. Then he sighs and takes the form into the room to explain to them what he is going to do.

He will retire from the medical profession with a broken heart.

As someone with no real knowledge of medicine I also have to say that I don't see this desire for "informed consent" all that positively. After all, I don't have enough knowledge to make informed decisions about my own health - that's why I'm speaking with a physician. His/her opinion is bound to be far more informed then my own and a few minutes of explanations isn't going to change that.

As a physicist if someone with no real knowledge of physics asks me a physics question I'll give them my best guess, and say how confident I am about it, but I wouldn't expect them to have an informed view on the subject.

The only sense in which patient can make useful decisions for him/herself is when the medical case is unclear and it comes down to their own subjective evaluation of relative risks and annoyances when it comes to different medical treatments.

I.e. some years ago I had some very unusual trouble with my heart for someone my age (i.e. 200+ heartrate for a 21 year old), although it subsided after a week in the hospital, perhaps as a result of using beta-blockers. The reason for the episode was never clearly understood, but my doctor thought that I should be put on beta-blockers for 10-20 years or maybe forever as a precaution. Since I felt like shit on the drugs, I decided that it's worth the risk for me to stop them, and I did slowly with the consent of my doc.

But I still have no real idea what the right decision was - it was sufficiently unclear (different doctors had different opinions), that it was as I saw it a toss-up between the informed people so I picked what I preferred. But in cases where the doctor really does know what he's doing, thinking that I know better would have been stupid.

To me too, informed consent is a liability waiver with feel good added. There's no way I can understand the true risks of a surgery, or how much I will be depending on the abilities of the surgeon (if he's not letting an intern do the work, odd that they never have a check box for "I only want to be operated by the guy I talked to").
It's like getting government approval for a chemical plant, I file my paperwork and get it approved, but at the end it's my calculations and how I operate the unit that matter, not the fact that the EPA has signed off on it. That only counts for lawyers.

Informed consent is not a liability waiver. It's meant to be a process where the clinician attempts to explain to the patient as best as he/she can why the clinician wants to do what she/he wants to do to the patient. One way to think of it is an explicit statement of what the clinician's internal thought process is and an explicit statement of why the clinician thinks this course of action is a good one compared to other courses of action, including doing nothing. Doing nothing is a course of action.

Sometimes it seems very clear that one course of action is the way to go (like reducing a compound fracture), but not always. The idea is to invite/encourage the patient to participate in his/her own care. Sometimes this approach works better for some patients than another.

And yes, WcT, everything you've said is also true. This is not a perfect process, but I'm not sure if there is a better one.


Part of the point of informed consent is precisely that even with good data, people may have different priorities. For example, someone with chronic pain may or may not think it's worth using narcotics long term, and accept the tradeoffs of the side effects there. A friend of mine with narcolepsy had to fight medical staff who assumed that of course she wanted a drug to stop the cataplexy (falling down at a certain trigger, in her case, being surprised by a joke), even though the same drug would make her much less alert and intelligent. She decided she would rather collapse now and then, and still be able to read, and write coherent paragraphs and even essays. (It may be that the doctors should have made that choice clearer to their other patients: they took for granted that it was worth treating the symptoms.) Again, there's a migraine drug that also reduces intelligence in many people who use it; it shouldn't be anyone's first thing to try, but some people decide it's worth the price, because of how disabling chronic migraine can be.

Informed consent doesn't mean "never prescribe Topamax," it means tell the patient how likely it is to help them, and what the likely side effects are, and let them decide whether it's worth it. Your doctor probably knows more about your disease than you do. But they don't know what your priorities are: what symptoms and/or side effects, if any, fall into your own personal "I'd rather be dead," such that you'll do anything at all to treat them, and/or that you don't care how effective that drug is, you don't want it.

Informed consent should also let the patient know whether this is a tried-and-true technique, or an experimental one. The patient's choices may be different in the two cases.

Informed consent, and the culture around it, may also reduce the chances of another Tuskegee Experiment. We know that trained, reputable doctors have put their curiosity above the good of their patients. Not often, I hope, but even rarely is too often: things like that are part of why k8's employer is running into patients who don't trust that he'll do everything in his power for them. Because some patients know that he's had colleagues who wouldn't, and some may even have dealt with such doctors. And there's no way, walking into his office, to know which is which: they have the same diplomas, and the same distinguished looks and firm handshake.

Brilliant comment, Vicki.

By Katherine (not verified) on 19 Jan 2010 #permalink

Vicki, your comment fits great where there's a choice of treatments to be made. But the question in the article, and obviously the aspect where most of us get to sign those forms, is about surgical procedures. And if the doctor tells me I have testicular cancer, and they have to come off, then I can be as upset about the side effects as I like, I still have to sign that form if I want to live next year. Well, alternatively I could drink my urine and have coffee enema, but I think I go for the surgery a week into that regime, sans anesthetics.

While the culture of informed consent seems quite likely to reduce the potential for horrible medical incidents like Tuskegee as pointed out by Vicki, I really don't think it accomplishes much else. Physicians are not truly providing information in a neutral way so that I can make up my mind. They lead me to their preferred course. That's good if they are a great doc, but not so good if they aren't. It seems doctors (or other staff) should more training in providing balanced, non-leading information for patients.

By genehunter (not verified) on 20 Jan 2010 #permalink


But what are you seeing a doctor for? You want their expertise. Rarely does that come without leading information. If I see 2 options and one is CLEARLY better than the other in terms of the things that you've said are important to you (generally speaking, length and or quality of life), I SHOULD be leading you to that choice.

When it comes to life and death, I don't think there is a neutral point of view.

Vicki, I think I did make those caveats which are effectively ones of cases where either the medical case isn't clear (and hence what should be done isn't clear), or where there are 2 or more viable choices and it's mostly up to personal preference. I.e. like would you like to have a head-splitting migraine or to feel dumb.

Still I imagine that cases like that are the exception, not the rule - although I don't really know if that's correct. If you have a more standard case where most physicians would agree on what should be done, then it would be stupid for an uninformed patient like me to decide that I know better.

I have nothing against the notion that the doctor should explain the different choices and expected consequences of medical decisions - and then give his personal recommendation. My problem is more with the cultural notion that "the patient knows best" - which shouldn't be true. Of course there will be stupid doctors which will make mistakes, and like you said, you're not going to recognize them by their handshake. But in general, you're also not going to recognize them by their explanations of your medical problem, unless you have alot of knowledge yourself.

Now perhaps you can argue that the mere fact that the doctor would have to explain him/herself would lead to less bullshit, even if the patient wouldn't recognize it. And I'm guessing that's true to some degree.

"And if the doctor tells me I have testicular cancer, and they have to come off, then I can be as upset about the side effects as I like, I still have to sign that form if I want to live next year."

But has it been explained to you that the doctor can just remove some of the tissue, leaving you possibly fertile, but still at risk of cancer, or that he can remove both entirely and thus greatly reduce the risk of leaving behind cancer cells? What's the doctor's estimation of the chance of leaving behind cancerous tissue in both cases? What can be done to reduce scarring? What's the recovery time? I have a toddler - when will it be safe to pick him up again? I know some surgeries require physical therapy afterwards - does this one?

I could go on. Even if you know that the surgery's necessary, you're likely to have questions and concerns, and the "informed" part of "informed consent" requires that those questions be addressed, if not answered.

WcT and genehunter: There are situations in which one option is clearly better than the other, i.e. patient with appendicitis: taking it out is clearly better than not. But there may also be situations in which two potential options are medically the same and the patient preference is more important. It is those situations in which one might reasonably ask whether the information is being presented in a fair way or not.

For example, breast cancer. For a sufficiently large breast and a sufficiently small tumor lumpectomy/radiation and mastectomy have equivalent outcomes in terms of tumor recurrence. However, they have different side effect profiles. My personal preference is for mastectomy-I don't much like the side effects of radiation and would prefer to avoid them. So I might have to be particularly careful to avoid harping on the possible side effects on radiation*. Conversely, a doctor who found mastectomy a horrifying mutilation would have to be careful to be sure to inform the patient adequately of the risks of radiation. In this type of context the conversation that surrounds signing the informed consent can be very useful. The form itself is just documentation that the conversation occurred.

*If I ever had those conversations. I'm not a surgeon so I generally don't.


If I'm reading you correctly you're saying that where medical outcomes are roughly equivalent, it's easy for a doctor to let their own biases dictate the informed consent conversation.

I concede the point, I'm going into emergency med, and most of the time, the informed consent conversations I'm having are more like the appendectomy patient, or otherwise clearly indicated procedures without good alternatives, so I (incorrectly) generalized that a step too far in responding to genehunter's comment.

That being said, in med school, we were taught lots of ways to minimize our bias and actually do informed consent well - mostly by starting these conversations by finding out what the patients expectations and goals of therapy really are, and what things would be important to their making a good decision here.