January 13, 2010, meeting of the St Paul Support Group in Stillwater, MN:
Brian Van Ness, Ph.D., Director of the Division of Medical Genomics, co-Director Institute of Human Genetics, University of Minnesota, met with the Stillwater group today at the Family Means Center. The meeting was a discussion, rather than a presentation, and covered several topics:
What causes myeloma?:
There is only a weak statistical connection to farm work and diesel fuel, not much else. A group member noted that workers in the New York City Twin Towers disaster now seem to be developing myeloma at a greater rate and at younger ages than the population, and Dr. Van Ness pointed out that the same group of people were developing other cancers at an unusual rate as well. He explained that wherever new cells are constantly being developed, such as in the bone marrow, there is a greater risk of cancer developing. The "mother" cell needs to impart an exact copy of the DNA to the "daughter" cell, and any interference from environmental factors has the potential to cause cancer.
A member asked whether religion is ever factored into researchers' thinking. Dr. Van Ness responded that spirituality may be beneficial because it can relieve stress which can depress the immune system. Another member pointed out, though, that religion can sometimes also work in the opposite direction by laying on guilt and other stresses.
Personalized medicine:
We get personalized medicine now, because we are all different and our hematologists will try this and that, looking for a treatment that works without debilitating side effects. But with
improved personalized medicine, the doctor would know in advance what will work. Genetics may help to predict both the efficacy and the risks of a specific drug for any particular individual, possibly even the best starting dose.
How long will this take? Years, maybe four or five years, maybe more. There is now an explosion in the use of DNA information regarding many cancers and, indeed, many other diseases besides cancer. One of the answers that may be available first: What are the genetic variations that predict drug response?
Some genetic tests are already available. The FDA has recommended genetic testing for:
- Warfarin, which is a blood thinner which can work far too well on some people and not well enough on others;
- Prozac, which has the potential to be very harmful to some children who do not metabolize it well; and
- Thiopurine, used for leukemia, which is a very good drug but can kill 1 of 300 children by wiping out the bone marrow.
Maybe there will be an equation, eventually, or a computer program, which will bring in all available information, giving each factor its own weight, and will come up with a best treatment.
Ethical issues:
What is the best balance in protecting the personal information of an individual who has submitted a DNA sample for a study, such as
Bank on a Cure. Example: What if I discover that one particular individual has a very high risk for breast cancer? Or diabetes? This is called an "incidental finding," because it is not information that the study was looking for. Do you tell the patient? What if the patient really would rather not know? Is there an ethical obligation to tell the patient
something? Dr. Van Ness is on a national committee which is wrestling with this issue right now.
Whether or not there is an incidental finding, is there an obligation to return the results of a scanned genome back to a study subject who wants it? Right now that information would be of little use, but it might become quite valuable in a few years as the human genome becomes better understood and methods of analysis improve.
We expect that the myeloma patients of the future will benefit from the results of research such as Bank on a Cure, but will those of us who contributed samples to it be able to benefit from its findings?
Dr. Van Ness is considering a web-based genetic analysis tool, to be available to each person who contributes DNA. It could be updated whenever a new genetic factor is identified. There are issues, because of the Freedom of Information Act and other federal and state laws.
Personalized Health Care:
Maybe "personalized health care" is a better concept than "personalized medicine," because it includes all of the modes of care that we need.
Dr. Van Ness quoted biotech guru Leroy Hood, who has said that medicine should be: "Personalized, predictive, preventive, and participatory," P4 medicine. Research should move out of the lab and into "connected thinking," with physicians connected to researchers, pharmacists, nurses, patients, and other providers. This will help produce the equation that will yield the best treatment for an individual.
The International Myeloma Foundation (
IMF) brings health care professionals together three times per year to discuss the best modes of therapy. As an example of this discussion, there is currently a huge debate about very different approaches for treating newly-diagnosed patients: (1) Aggressive therapy with multiple treatments, in pursuit of a complete remission, or (2) Less-aggressive therapy, using one or two treatments at a time, perhaps in sequence, aiming to make the disease a chronic one. There is currently no clear evidence that one approach is better than the other. Doctors who embody these polar approaches might be Dr. Barlogie at Arkanses versus Dr. Rajkumar at Mayo.
Major Initiative in Personalized Health Care at the University of Minnesota:
Dr. Van Ness is launching a major initiative at the University in Personalized Health Care, supported by a strong research program in genomics. This initiative is sponsored by the Minnesota Medical Foundation and the Cancer Center, with a call for philanthropic support. They are looking to raise $ 5 million in the campaign. If you are interested in contributing, contact Dr. VanNess at
vanne001@umn.edu or Cathy Spicola at the Minnesota Medical Foundation,
c.spicola@mmf.umn.edu.
