A Test for Genetic Privacy, by Jerry Ackerman, The Boston Globe
A Pilot Study of Genetic Privacy, Discrimiation, and Informed Decision-Making, at the Genetic Alliance - Can You Help?
Looking for Lawyers in all the right places, Thomas D. Rodenberg, esq.
Uncharted Territory: Pheos and Psychological Symptoms, by Pierre Jacomet

"Based on the experience in our family, patients with pheochromocytomas can present with symptoms akin to neurotic or psychotic states."

Studies at NCI Seeking Patients, U.S. National Cancer Institute
Ask the Experts: Polycythemia and Hemangioblastoma
Ask the Family: Positional Vertigo
Human Research Protections Course available on the internet
Physical Activity and Immune Function, by James S. Huddleston, M.S., P.T.

"Moderate endurance exercise, such as brisk walking, stimulates positive changes in ... the body's first lines of defense ... On the other hand, high intensity exercise may have a negative impact on immune function."

Drink Water!
Meet the Directors: Jay Platt and Tom Rodenberg
Chapter Leaders meeting at conference in June
Pen-Friend needed for girl age 13
Speaking Tips, by Jay Platt
Health Management in von Hippel-Lindau: conference June 22-24, Palo Alto
Help Lead VHLFA to 2004 - nominations for Board and Committee positions due May 15.

of Genetic Privacy, Discrimination, and Informed Decision-Making

The purpose of this study is to identify and document incidents of genetic discrimination and privacy abuse. For the purposes of this questionnaire, we define genetic discrimination as being treated or favored differently based on the results of a genetic test, diagnosis of a genetic condition or family history information.

Have you or a family member:

Been diagnosed with a genetic condition? For the purposes of this study, a genetic condition is a current condition or future health concern that is passed down through a family member or caused by a change in a gene or chromosome. It can be discovered through genetic testing, by having symptoms of a condition that another family member has been diagnosed with, or being a carrier of a condition. A pre-symptomatic condition is a genetic condition that does not show now but may develop later.
Been identified with a genetic predisposition? A predisposition is the potential to develop a certain inheritable disease or condition.
Been informed about the risks and benefits of genetic testing which may lead to being identified with a genetic condition or predisposition? This forms the core of informed decision making.
Had problems in obtaining employment or being promoted due to a genetic condition or predisposition?
Had problems obtaining health, disability and/or life insurance, or had rates and/or scope of coverage varied because of a genetic condition or predisposition?

If you answered yes to one or more of the above questions, we would like you to complete the Genetic Discrimination Questionnaire and return it to us. The questionnaire can be found under "Privacy and Discrimination Pilot Study" on the Genetic Alliance website, or paper copies can be obtained by telephoning the Genetic Alliance at +1 (202) 966-5557.

Please Help - Share your Story

As printed in the VHL Family Forum 9:1, March 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.