One of the other comments had to deal with organ and blood donation. I strongly urge you to check with your local Red Cross before you become a blood donor. Local guidelines may be skimpy on who is eligible to donate, but I would be surprised if your blood products are safe for donation.

That said, please “recruit” as many of your friends and family as you can to become frequent blood donors. My daughter and son-in-law are both regular donors. They saw with their own eyes how many bags of blood products PC went through during his transplant. If not our friends and families, who can be more motivated to “pay forward” for the times when you may need a bit of caring help from some stranger who bothered to donate blood?

I too found the story of Henrietta Lacks to be fascinating. As for the issue of not obtaining her consent,the doctors and researchers did not violate the standards that were in practice at that time. It probably seemed perfectly reasonable to them to use tissue that would have been discarded as medical waste in a effort to find a cure for cancer. Obviously attitudes have evolved and changed since then and we now consider informed consent to be the acceptable standard.

There is an article about Henrietta Lacks on the Smithsonian Magazine website. Towards the end of a very long list of comments is a touching entry written by David Greene,grandson of Dr George Gey,who received the tissue that was removed from Mrs Lacks. He writes “My grandfather carried the cells all over the world in tubes,in a modified fly fishing case (he loved fishing),next to his body in his upper suit pocket to keep them warm. He GAVE the cells to any research lab interested in cancer research.” His entry leaves no doubt that his grandparents were dedicated researchers who devoted their lives to science in the hope of helping people.

Although failure to obtain consent would be considered a serious ethical violation today,I do not believe that it is fair to judge the actions of sixty years ago, by well intentioned people, by today’s standards.

As to the issue of who owns the profits,I have no idea how to address that concern. However,without the potential for profit who would be willing to invest the money necessary to build,equip and staff research facilities and develop new treatments and drugs? When my nephew worked as a research scientist at Oxford University in the University’s Department of Pharmacology lab some of the funds for research came from pharmaceutical companies. Obviously these companies benefited from the information derived from this research,but so did everyone else as the results of their research is considered public domain and is available to anyone.

I think it is accurate to say that we have all benefited in some way(s)from medical research,so why wouldn’t we be willing to “pay it forward” without expecting payment for any contribution we are able to make to medical research?

I am aware that we owe a debt of gratitude to all those patients who have made medical research possible. Yesterday I completed a 4 dose course of treatment with rituxan. I went to my first treatment very conscious of the people who died whilst participating in the clinical trials of this drug. Without their enormous contribution I would not be sitting here today with a completely normal CBC and a huge reduction in the size of my lymph nodes.

When I graduated from nursing school in 1969,my first assignment was to a unit that treated patients with kidney disease. I was at a big teaching hopital in the north of england and we were one of the first hospitals to do kidney transplants and have a dialysis unit. During the short time I spent working there I took care of a kidney transplant patient on the night he had just had surgery. I also took care of a young man who had rejected his transplanted kidney. I have never forgotten those patients whose only chance of a normal life was a kidney transplant and who,at that time,had so little hope of getting one.

I found it genuinely distressing when I realised that I was no longer eligible to be an organ donor (you have to have been free of cancer for 5 years). Although I can no longer contribute through organ donation,I would be honored to contribute in any other way that I am able. If scientists feel that my leukemia cells would be of help in developing a cure for this disease,they are welcome to take as many of them as they want. After all,I certainly don’t need them!

Pam Peterson

Bethcat– your story, which I will never forget, illustrates why I always err on the conservative side. Today treatments or drugs are deemed safe and some close to modern panacea. But in the near future they may be debunked or side effects come to light. Like you said, for the most part, doctors have wonderfully altruistic motives, they want to help their patients, and use current arsenals to do it. It’s up to us to question, question, question, read, read, read. When you feel right about it, dive in and don’t look back. But sometimes all you can allow yourself is a toe in the water– we have to listen to our guts after doing all the homework.

Chaya–fascinating article. I had no idea on this history. Thanks to you and to Mrs. Lacks.

namara

Truth was this was an experiment. One of hundred conducted on US citizens, , without their knowledge or any real consent. In each experiment patients were either told they had a disease or that this was a treatment. The US congress did an investigation during the Clinton Administration, under Hazel Oleary and found the government had done no harm since informed consent was not really possible to achieve. I imagine not, not when the stated ‘facts’ were distorted to begin with. The Ethics advisors to congress during those hearings are professors at Hopkins. Their book on medical ethics is still used in medical schools today.

Mrs. Lacks was part of that group of citizens who were experimented on. Some were indeed riddled with terminal cancer, but many were told they were and were not.

I did receive a ‘thank you’ note from one of the follow up scientists after over 50 years when he could no longer get funding from the government to continue his studies. Those studies had supported him and many others for years. I have not been able to get one penny of medical aid, not one offer of help, nothing. The doctors who led those experiments were granted immunity as part of the paper clip project. German scientists, who had worked in the concentration camps were granted full access to US hospitals to continue what they started. This went on from after WW11 till the early 70′s.

Probably the worst part of our journey was not being believed for nearly 50 years and having diagnoses missed or ignored due to denial of what we had been exposed to. The consolation prize is supposedly that we have all helped the advancement of medicine. Somehow I am not terribly comforted by that alone. But I do feel I’ve paid my debt to society.
I always wonder what the extra tubes of blood I now agree to give will really be used for. Doctors and hospitals and drug companies benefit too when we do allow ourselves to be in studies. While it’s true that now we frequently get the treatment for no charge, it pales by comparison to the money that is made by those other parties and the credit that they get. Not to mention the travail of being treated in many cases. Especially in studies where a treatment is given to prove it lesser to another. I don’t have any answers, but I can relate to the woman who had her cells sold for profit without her knowledge and with her family. Unlike her however I wonder what may surface in my children and grandchildren – not the legacy I would have chosen for them. But no one asked me.

How to determine if a doctor who seems wholeheartedly to believe in a treatment is really convinced? I’m sure that the doctor who referred me for ‘treatment’ felt he had been given the best advice from his own hospital. He was not a researcher, but a good pediatrician; well loved and respected by many. And he was with the ‘best’ hospital in Chicago at that time. A hospital where many new an promising treatments had emerged, such as the use of insulin for diabetes, the gastroscope, the incubator, cholesterol’s effect on heart disease, and later polio vaccine. why doubt his advice. divining rods anyone?

beth fillman