A Glitch On the Road To Personalized Oncology

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biobanking, biomarkers, cancer, clinical trials, health, HeLa cells, medical education, medicine, oncology, participatory medicine, research

By Richard Just, MD

We receive a quarterly magazine in the office called CURE, which stands for Cancer Updates, Research & Education.  Browsing through the Winter, 2011 issue, I noticed a short article entitled “Lacks’ Legacy” with an accompanying picture of Henrietta Lacks.  I’ve previously published a blog on HeLa cells, the cell line cultured from her original cervical cancer.  These cells are immortal in that they contain an enzyme at the tips of their chromosomes which prevents them from undergoing programmed cell death (“apoptosis”).  “Lacks’ tissue has since spawned an estimated 50 metric tons of HeLa cells, and the total number of HeLa-related medical studies-roughly 60,000 to date-is growing by about 300 per month.”  These cells were so malignant they were able to rapidly proliferate despite primitive tissue culture procedures.

It then occurred to me that the article was actually a sidebar to another piece called “Why Banks Need Your Tissue for Research” by Paul Engstrom, about tissue repositories.  One major message is the wide gap that exists between knowledge generated in the laboratory (meaning biomarkers and targets for new therapies) and biobanking.  A partial list of problems includes “inconsistent collection, processing and storage of tissue, which can alter its molecular composition and skew experimental outcomes; shortages of high-quality tissue; outdated preservation techniques; the high cost of and inadequate funding for repositories; patients’ lack of awareness about tissue donation; and, for competitive and other reasons, institutions’ hoarding specimens they might otherwise share with researchers elsewhere.”  These are major issues.  Since it is becoming a standard practice in clinical trials to collect, store and study tissue, then maintain these specimens for future investigations, addressing these concerns is essential.  The recently completed TAILORx study of 10,000 newly diagnosed women with early stage, hormone receptor positive, node negative breast cancer is a good example.  The Oncotype DX Assay to identify patients who might benefit from the addition of adjuvant chemotherapy to hormonal therapy as opposed to those who won’t was obtained from archived tissue specimens.  It is therefore vital that all efforts are made to assure that all institutions supplying these tissues and the repositories processing and storing them follow standardized procedures to validate that results are accurate.

All of this sounded familiar to me.  Then, I remembered an article I’d read previously in one of my favorite medical journals, WIRED magazine, entitled “The FLESH FILES” by Steve Silberman, June, 2010, pg. 156.  This is when I first became aware of the extent of these problems.  In 2005, the NCI announced the plan to create the Cancer Genome Atlas using the same techniques employed to delineate the human genome-high-throughput DNA sequencing, lab automation and computational biology.  The pilot phase would catalog genetic mutations in three of the major cancer killers:  glioblastoma multiforme (the most malignant brain tumor), serous cancers of the ovaries, and squamous-cell lung cancers.  This Atlas could reveal new tests, like the Oncotype Dx test, that would help determine treatment, develop novel agents directed against these mutations, and new methods to detect these cancers at an earlier stage.  Unfortunately, the Atlas was put on hold not because of difficulty with scientific techniques, but due to lack of viable tissue specimens to test.  In short, the biobanking system was in shambles.

Reasons for the sorry state of tissue repositories are numerous.  Focusing in on one aspect, freezing and thawing of tissues, classical solutions used to cryopreserve cells and bodily fluids are glycerol and dimethyl sulfoxide (DMSO).  Tissue requires a different preservation method, using two relics from the Victorian era:  formaldehyde (in a diluted form called formalin) and paraffin.  Formalin acts as a fixative, arresting all cellular metabolic processes, while paraffin prevents oxidation.  Under the microscope, these substances preserve cellular structure.   But they play havoc with genetic material inside cells.  “Some cells get so stressed that hours after they thaw, they take themselves out of the gene pool permanently” by undergoing apoptosis, the same “programmed cell death” that is not seen in the immortalized HeLa cells.  Even cells that don’t die experience genetic changes in the freeze-thaw cycle that can lead to an overestimation of the quality of biospecimens.  The result is corruption of the genomic data.

Additionally, formalin causes significant alterations to cellular RNA, a major probe used to decode the genetic mechanisms of cancer.  And DMSO can actually accentuate the metastatic potential of a cancer.  If infused into patients, DMSO can result in chills, nausea, kidney failure and cardiac arrest, especially in children.  Use of DMSO can be reduced by “chilling tissue at a carefully controlled rate immediately after harvesting (using a technique appropriated from Eskimos in the early 1900s by Clarence Birdseye, father of the frozen-food industry).”  But, adoption of this procedure would disrupt the routine of already overworked hospital staff.

Enter Carolyn Compton, M.D., PhD, director of the Office of Biorepositories and Biospecimen Research at the National Cancer Institute (NCI) in Bethesda, Md.  She is spearheading the effort to establish a central, public-private cancer tissue repository called the Cancer Human Bank (caHUB).  Unfortunately, these plans are on hold due to lack of sufficient federal funds.  Instead, $23.5 million in federal stimulus funds will be used by the NCI to expand research on standards for collecting, processing, storing and disseminating tissue specimens.

Cancer Survivorship

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12 steps, cancer, digital media, epatients, evidence based medicine, health, innovation, medical education, medicine, oncology, recovery, twitter, wellness

By Richard Just, MD

The fact that the term “Cancer Survivorship” is now part of our vocabulary is a testimony to advances made in management of these diseases.  Most cancer survivors, however, are not unscathed by the experience.  As I tell my patients, they won’t be entirely as they were before treatment.  How these issues are dealt with varies from person to person.  But, awareness that chronic problems may persist long after treatments end signals that even though we’ve won the battle, the war is not necessarily over.  We may need to address problems in the physical, mental/emotional and/or spiritual spheres.  After all, quality is as important as quantity.

Certainly, health care professionals are well trained to deal with physical issues.  Attempting to address the totality of needs in an organized manner is a recent phenomenon.  Certainly, in thinking about programs that have been successful in supporting people mentally, emotionally and spiritually, 12-Step Programs come to mind.  The Steps are compelling as they are for anyone affected by the disease alcoholism, including the alcoholic (A.A.) and the “caregiver” (Al-Anon).  Substitute “cancer” for “alcoholism.”  The value of The Steps is that they provide a guideline through the process of recovery.  In fact, I prefer the designation “recovery” over “survivorship” as it implies an ongoing process with relapses and remissions along the way.

At first glance, the verbiage doesn’t seem to be appropriate.  But, The Steps suggest four primary ideas:

• “We Are Powerless Over the Problem of Alcoholism.”  This notion of powerlessness is difficult for healthcare professionals, especially physicians, to accept.  The intention is that we as individuals have no ability to change attitudes and behaviors of others, but we do have control over ourselves.  Think the Serenity Prayer:

God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And the wisdom to know the difference.

In fact, this is a very empowering concept that releases each of us from worrying about issues that don’t concern us and address our energies to our own lives.

• “We Can Turn Our Lives Over to a Power Greater than Ourselves.”  Many find the idea of a Higher Power difficult to embrace, while others already believe in a Power greater than themselves, but feel that “God has deserted” them.  Both viewpoints hinder recovery as they tend to foster a victim mentality.  Personally, I dislike the designation “cancer victim” for this reason.

The slogan:  “Let Go and Let God” can also be very liberating, recognizing that The Higher Power is in charge of our lives and we are not victims.  The 11^th Step provides details:

Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.

• “We Need to Change Both Our Attitude and Our Actions.”  Both the cancer and its treatments can  result in distorted thinking.  Some are left with severe fatigue and pain; others with long-lasting memory deficits called chemobrain.  Anxiety and depression are not uncommon.  The possibility of recurrence is always present.  Some become angry and blame their situation on others.  Obviously, these behaviors can be self-destructive and ruin relationships.  In these difficult situations, a useful tool in 12-Step programs is sponsorship.  Having someone who has lived through similar circumstances and recovered always there for support and guidance is crucial for recovery.

• “We Keep the Gifts We’ve Received by Sharing Them with Others.”  Probably the most important concept.  Several studies have shown that participation in cancer support groups improves outcomes.  But many patients still are reticent to join.  Some prefer the privacy of one-on-one sessions with a therapist.  On the other hand, they lose the personal experiences of people who have experienced what they’re experiencing.  One compromise is to have a mentor or sponsor who has personal knowledge of the treatment guide the patient and family through the process.

For this reason, 12-Step programs rigidly subscribe to anonymity to encourage participation in meetings and sharing experiences with others.  The most important item in the success of these programs has not been identified, but several reports have suggested sharing at meetings as the major one.

I’m thrilled that we’re talking about Cancer Survivorship these days.  The fact that more people are living longer is very gratifying.  Therefore, formally addressing quality of life issues is the logical next step.  Incorporating 12-Step program concepts into Cancer Survivorship Programs, proven successful in other diseases, merits serious consideration.

Metastasis

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cancer, epatients, evidence based medicine, health, medical education, medicine, metastasis, oncology, participatory medicine, social media, wellness

Throughout my career in oncology, I thought I was communicating difficult concepts to patients and families relatively well.  Recently, my wife and I visited our daughter in Salt Lake City over Thanksgiving.  Catherine is an extremely accomplished blogger and video broadcaster.  So when she commented on my blogs, I paid attention.  Her (constructive) criticism was my use of some medical terminology which she didn’t understand.  More surprising to me was the example she cited:  “metastasis.”   Like others I recalled in the past, she had trouble pronouncing the word.

My wife, Dee Dee, is a psychotherapist with training in psycho-oncology and hypnotherapy.  She is adept in psychosocial support for patients and families.  So when she spoke, I listened.  Hearing the above, her input was that many patients and family members have little understanding of what cancer is.  Since the ability to spread (metastasize) from the organ where cancer started to another organ or region of the body is what defines cancer (malignancy), and a benign growth does not have this capability, metastasis deserves further comment.

Cancerous cells can spread by one of three routes:

1. By direct extension locally to adjacent structures.
2. To regional lymph nodes that drain the primary organ.
3. To sites distant from the original growth, implying spread through the bloodstream.

Using breast cancer as an example, fibro-adenoma is a benign growth that appears as a smooth, round lump felt on breast examination or visualized on mammography.  Contrast this with ductal carcinoma-in-situ (DCIS), which is malignant but is confined to the tubes connecting milk glands to the nipple which has not invaded into the surrounding breast yet.  DCIS usually presents with tiny calcium spots on mammograms, not an actual lump.  Finally, infiltrating (invasive) ductal carcinoma (IDC) appears as a breast lump usually hard and irregular that can spread by all three routes listed above.

The mainstay of treatment for over seven decades was the radical mastectomy as championed by William Halsted at Johns Hopkins in the 1890’s.  This procedure was based on the theory that breast cancer spread locally and to regional lymph nodes, mostly in the axilla (armpit), before it invaded into the bloodstream and spread to distant sites far from the breast itself.  Therefore, if the entire cancer was removed surgically with wide margins of normal tissue before the last event occurred, patients should be cured.  Likelihood of cure was also increased if lymph nodes were not involved yet.  In my training years, it was not uncommon for a woman to feel a lump, call her physician who admitted her to hospital that night for surgery the following morning, telling her that if she woke up without a breast she’d know she had cancer.

Analysis of 7 decades of experience with radical surgery revealed if a woman experienced a long remission she possibly did not need such a disfiguring operation; and conversely, if the disease had already spread through the bloodstream the procedure would be of no benefit.  To test these concepts, Dr. Bernard Fisher of the University of Pittsburgh, started a clinical trial comparing radical mastectomy with simple mastectomy or lumpectomy + radiation therapy.  Since benefits of all 3 procedures proved to be essentially equal, there was no need for radical procedures.  Also, whether or not regional lymph nodes were involved with metastases proved important in estimating prognosis.  If nodes were free of disease, 5 year disease free survival was 80%; if nodes contained metastases, this figure fell by about 30%.  But the question arose:  “If Halsted’s theory as to how breast cancer spread (first to lymph nodes, then to the systemic circulation) was correct, why weren’t 100% of women with node negative disease cured?”  This lead to the notion that some breast cancers have already metastasized at the time of diagnosis, and benefit could only be obtained by treating with something that permeated every organ in the body, i.e., chemotherapy, used as an “adjuvant” (to give a boost) to loco-regional treatments.

In conclusion, one of the reasons Halsted’s attempt to cure breast cancer with radical surgery failed was an incomplete understanding of the process of metastasis.  No amount of local therapy, be it surgery or radiation therapy or both would cure a patient whose malignant cells had bypassed regional lymph nodes and gained access to the systemic circulation.

When Less Is More – Part III

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cancer, health, innovation, medical education, medicine, oncology, physician, Siddhartha Mukherjee MD, twitter, wellness

In addition to screening PSA testing for prostate cancer and screening mammography for breast cancer, the U.S. Preventive Services Task Force (USPSTF) also recommended changes in routine screening for cervical cancer.  Again, their recommendation was for less screening, prolonging annual PAP smears to every three years for low to average risk women.  Predictably, controversy ensued.  All three tests were proven to diagnose potentially lethal cancers before symptoms appeared, and therefore, with early treatment, reduce the chances of these cancers from ever appearing (secondary prevention).  So what’s not to like?

For reference, I turned to “The Emperor of All Maladies; A Biography of Cancer” by Siddhartha Mukherjee, M.D., published by Scribner, 2010.  Part Four in this remarkable book is entitled:  “Prevention is the Cure”.  The saga of George Papanicolaou is chronicled and is worth reading (pp 286-291).  Mukherjee then turns his attention to issues involving screening trials in general.  “Screening trials in cancer are among the most slippery of all clinical trials-notoriously difficult to run, and notoriously susceptible to errors.”  There are two main performance errors to consider:

1. Overdiagnosis (false positives) meaning you test positive for cancer but you don’t have it.  Not good for your emotional and physical wellbeing.  Can lead to tests and treatments that are unnecessary and possibly harmful.
2. Underdiagnosis (false negatives) meaning you test negative but really have cancer.  Again, not nice.  Over the years, I’ve had a not insignificant number of women state that their cancers were not detected on mammography initially and they, therefore, request an alternative screening modality.

Unfortunately, when researchers try to reduce the likelihood of false positives, the test in question can become too insensitive and result in more false negatives, and vice versa.  The goal is to design a test with the highest sensitivity and specificity as possible, but achieving this can be difficult.

The USPSTF is currently examining these tests from another perspective, i.e., whether or not the test improves mortality.  This criterion has to be distinguished from increased survival that can be flawed by lead time bias.  If we are using increased survival as the endpoint of the study, some in the group screened by PAP smears when they are asymptomatic may develop cervical cancer a decade later and survive 5 more years.  Some patients in the unscreened group develop their cancers ten years later, and also survive 5 years.  Thus, the screened patients may appear to survive longer if lead time bias is not taken into account.

Certainly, we’re able to diagnose cancers when they are smaller and possibly curable with modern day treatments.  But these screening tests give very little information about the biology of an individual patient’s cancer.  When the topic of PAP smears and cervical cancers comes up, my mind focuses on “the Immortal Life of Henrietta Lacks” and her HeLa cells.  I wrote a ‘Hela Cells’ blog post on this fascinating story several months ago.  So when the author, Rebecca Skloot, was in San Diego two weeks ago, I made it a point to hear her speak.  Would events have transpired differently now?

1. “What if” no socioeconomic barriers to healthcare existed?  No racism, poverty and lack of education.  Regular PAP smears may have given her a better chance.
2. “What if” it was recognized initially how aggressive her cancer was?  She had a rare variant cervical cancer, an adenocarcinoma, which is known to be more aggressive than the more common squamous cell type.  When she initially presented she was found to have a small tumor.  Her physicians were surprised to see how rapidly Henrietta”s cancer recurred and spread after extensive surgery and radiation therapy.
3. “What if” we knew more about her risk factors?  We know the histology of her cancer indicated a more aggressive malignancy.  We know that it is a sexually transmitted disease in “sexually active” young women, and that she had other STD’s.
4. Then, maybe her disease could have been prevented with the HPV vaccine.  When her cancer cells were analyzed for the human papilloma virus, they tested positive.

Hindsight is 20-20.  But it is interesting to go back in time to see how much progress we’ve made and paths we need to pursue now.

Drug Shortages: A View From The Trenches

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cancer, clinical trials, clinicaltrials, CME, digital media, Dr Just, drug shortgages, elder wisdom, epatients, FDA, health, health 2.0, innovation, Just Oncology, kris ghosh md, medical education, medicine, oncology, Pacific Oncology, participatory medicine, pharma, physician, research, San Diego, social media, twitter, wellness

A few weeks ago, I had a discussion with Kris Ghosh, MD one of our local GYN Oncologists, (listen here).  We talked specifically about Doxil, the usual second line treatment for recurrent ovarian cancer.  We agreed that the lack of availability of the drug does limit options for these patients, with further increase in already heightened anxiety levels for patients and families.  Add to the mix the increase in stress levels of oncologists and our staffs trying to handle one more insult to a broken healthcare system.  In one patient who was due to start treatment I was able to substitute topotecan (Hycamptin).  Fortunately, she is responding and tolerating the agent very well. We had put her name on our list of patients who were waiting for Doxil when it became available.  So I was able to use the drug allocated to her for another patient with multiple myeloma. The only agent that had controlled his disease was Doxil. I guess the problem worked out well in these cases, but it appears that this shell game is going to become routine.  The question arises:  “Is this the harbinger of rationing cancer care?”

In my residency training in the late ‘60’s/early ‘70’s, I rotated through the Nephrology service when hemodialysis was relatively new.  Just like today, demand for the procedure far outstripped supply.  One of the factors taken into consideration in a negative way was anyone whose renal failure was due to diabetes.  That’s a lot of people!!  Obviously, we were very uncomfortable being put in that predicament.  Hindsight personalized this for me since my maternal grandfather died of sepsis after amputation of one of his legs for diabetic gangrene, my father died of every complication of diabetes and was hemodialyzed for 2 ½ years before his death, and I have type I diabetes and am on an insulin pump but fortunately no signs of renal impairment, yet.  I’m sure my father would never have been treated during my training years.  I’m sure our cancer patients experience similar anxiety and fear when faced our current dilemma.

Causes of shortages are multifactorial.  In Doxil’s case, the manufacturing plant in Alabama was struck by lightning during the tornado earlier this year.  Hard to believe but that’s the story.  Obviously an unpredictable Serious Adverse Event (SAE).  However, most of the chemotherapy drugs in short supply are older agents, e.g., bleomycin, cisplatin, cytarabine, daunorubicin, doxorubicin, etoposide, leucovorin/levoleucovorin, mechlorethamine, thiotepa, and vincristine.  Many are now off patent and therefore priced lower as generics; so not as profitable.  In some cases manufacturing of the drug was stopped in anticipation of newer and, of course, more expensive replacements.  One of the predictable side effects replacing old, cheaper drugs with newer, more expensive agents is pushback from payors who deny coverage/payment.  We then get on the authorization-denial-authorization-denial merry go round many times leading to a teleconference with the medical director of the health plan.  All this takes time and can delay treatment for quite a while, adversely effecting results.  Especially when used with curative intent and when there are no good substitutes, this is unacceptable.  Another complication is the emergence of a “gray market” where drugs from questionable sources pass through unknown hands to our offices at up to 10 times the usual price.  In the ‘90’s we called this brown-bagging.  Trying to keep inventory straight as to which drug from what source belonged to whom was an added challenge.

From the above, it is obvious that health care is big business.  An invaluable source of health care information is, therefore, the Wall Street Journal.  In last weekend’s edition I learned that “Roche Holding AG has stopped delivering its drugs for cancer and other diseases to some state-funded hospitals in Greece that haven’t paid their bills.”  This policy may extend to Spain, Portugal and Italy.  Patients had to purchase chemotherapy from private pharmacies and bring them back to hospitals for administration.  In the US, we find ourselves in a similar situation in that we can’t afford to purchase some drugs for our patients.  So drug shortages are a global issue involving different causes requiring different approaches directed to specific problems.

I found two articles helpful in defining the problem and proposing possible solutions:

1. Link, M., et. al.:  Drug Shortages Threaten Patient Health and Safety; HemOnc today, vol 12 no 15, August 10, 2011, pg 1, 10-12.
2. Johnson, P.E.:  Drug Shortages:  Impact and Strategies; JNCCN, vol 9 no 8, August, 2011, pp 815-819.

Doctors, Patients & Social Media

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community, digital media, doctors, elder wisdom, health, innovation, Just Oncology, medical education, medicine, oncology, participatory medicine, patients, physicians, San Diego, social media, twitter, wellness

A recent report released by QuantiaMD aka @QuantiaMD and the CareContinuum Alliance (CCA) aka @CareContinuum is worth note. The survey was conducted by Frost & Sullivan in collaboration with QuantiaMD  and the Institute for Health Technology Transformation.

‘Social media’ was defined to include: “not only social networking sites like Facebook and LinkedIn, but also professional and patient networking communities specific to the medical field, blogs and sites such as YouTube”).

Executive Summary

Physicians are highly engaged with online networks and social media. Nearly 90% of physicians use at least one site for personal use, and over 65% for professional purposes. Overall, clinicians express significant interest in the potential applications of social media to their professions – whether via online physician communities, online patient communities or sites that could facilitate physician-patient interactions. A group of “Connected Clinicians” is using multiple social media sites for both personal and professional uses. These clinicians are the front-runners in applying social media to medicine, and are most eager to use it to positively impact patient care. Key take-aways from our study include:

• The vast majority of physicians are already using social media; Facebook tops the list for personal use, while online physician communities are driving professional use.

• Physicians familiar with online patient communities believe they positively impact patient health; however, awareness of these sites is low.

• Some 28% of physicians already use professional physician communities, with the highest enthusiasm around using them to learn from experts and peers.

• Clinicians see the potential in online interactions with patients to improve access to and quality of care, but concerns around patient privacy, liability and their compensation for such activities must be addressed.

• There is significant need for secure, convenient forms of electronic communication that clinicians can use to communicate with each other, and with patients.

• Over 20% of clinicians use 2 or more sites each for personal and professional use; these “Connected Clinicians” are the most eager to use social media to improve health care.

• There are opportunities for constituents across the health care system to use social media as a tool for improving patient care.

Our study included 4,033 clinicians and was conducted in August of 2011 on QuantiaMD. QuantiaMD is the leading mobile and online community serving over 125,000 physicians with opportunities to learn from, and exchange insights with, their peers and experts in their fields.

To read the full report, click here.

A big ‘h/t’ to both QuantiaMD & CCA!

‘HeLa’ Cells

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cancer, Dr Just, elder wisdom, health, HeLa cells, Just Oncology, legacy, medicine, oncology, physician, social media, twitter, wellness

I inherited several traits from my father.  First and foremost was Type I/adult onset diabetes.  But, on a more cheerful note, I am also an avid, if not obsessive, reader.  I remember him sitting on the stairway leading to the upstairs bedrooms reading western novels until early in the morning so he wouldn’t disturb my mother.  That’s me.

Over the years I’ve had many fantastic reads.  One that my father shared with me was “Bury My Heart at Wounded Knee” by Dee Brown.  But none was better than “The Immortal Life of Henrietta Lacks” which I finished a few months ago.  It is a masterpiece written by Rebecca Skloot, a science writer who has written several award winning articles, but this is her first book.  Even though it is non-fiction, the book reads like a historical novel in the tradition of James Michener.  I wish my dad was still here so I could have shared it with him.

There are so many aspects to this story it is hard to do it justice in a page or two.  Ms. Skloot captures the socioeconomic hardships and racial politics endured by Mrs. Lacks and her family, and how they dealt with these indignities as best they could, ultimately with pride and grace.  The author also transports the reader back to vividly portray how medicine was practiced in the era Mrs. Lacks’ cervical cancer was diagnosed and treated.

From a personal perspective, as a medical oncologist who has participated in clinical trials for 36 years, and who has served as Chairman of the Investigational Review Committee at my community hospitals for 22 years, this book has essentially achieved textbook status.  I must confess I did not know HeLa stood for Henrietta Lacks.  I also didn’t know the biography of Johns Hopkins the person, and the history of that hospital.  It made sense that the reason her cancer was so aggressive was that it was an adenosquamous  carcinoma  rather than the usual squamous  cell type.  It was no surprise that her cells subsequently tested positive for HPV 18.  I also found the history of cell culture techniques fascinating as was the economics of the industry that resulted.  So, there was a lot of information that was new to me.

One chapter that was especially moving was 11.  “The Devil of Pain Itself”…1951, pg. 83.  The description of her level of pain was hard to read.  Our ability to manage pain has improved, especially with the advent of Hospice and more emphasis on palliative care recently.   But, last year I attended a symposium on Pain held at UCSD, and the first speaker discussed why no new analgesics have been added to our basic armamentarium of Aspirin and Morphine and derivatives of each for decades.  A sobering thought.

Chapter 17.  “Illegal, Immoral, and Deplorable”…1954-1966, pg. 127, discusses in detail the issue of informed consent, not only as it relates to full disclosure of the nature of the illness and the proposed treatment, but whether or not the latter is standard of care or experimental.   During my fellowship training, I was fortunate to have an attending physician one month who was considered a giant in hematology.  So, I decided to take advantage of my opportunity and asked him how he tells parents that their child has acute leukemia and his treatment recommendations.  His rule was to never use the word leukemia because “they can’t handle it”.  Remember this was 1973-1975 and a paternalistic attitude of physicians was not uncommon then.  I learned a lot from my attending.  The example I cited was a valuable lesson of what not to do.

Chapter 25.  “Who Told You You Could Sell My Spleen?”…1976-1988, pg. 199, brings up a second research topic of who actually owns the tissue after it has been removed from the patient.  Later chapters discuss the current hot topics of ownership of genetic material and stem cell research.  Since my internship and residency training was at UCLA and Wadsworth VA Hospital, and the incident cited occurred at UCLA when I was there, the story brought back memories of those days (and nights and weekends).  It is more personal and memorable for me as a result of this coincidence.

One of the colleges my daughter applied to (over 25 years ago) was the University of Redlands.  Prior to the start of the freshman year, they encouraged incoming students and their parents to read a book which would be discussed with faculty members in a “town hall” meeting.  The book chosen was Robert Pirsig’s “Zen and the Art of Motorcycle Maintenance”.  Even though my daughter didn’t attend that college, I read the book anyway (and loved it).  I wonder if “The Immortal Life of Henrietta Lacks” should be required reading for all doctors, healthcare personnel and staff involved with research?  Hmmm….