With help from the University of Pennsylvania and GAPSA,
PSPG was able to run a volunteer booth at the Philly Science Carnival on May 3
rd.
The carnival was part of the annual 9-day Philly Science Festival which provides
informal science educational experiences throughout Philadelphia’s many
neighborhoods. The title of the PSPG exhibit was “Who owns your genes?” and
featured activities for children and adults alike to educate visitors about how
genes make us who we are, what we can and cannot learn from personalized
genomics services like 23andMe, and how several biotech companies have
attempted to patent specific genes.
Kids learned how genes act as the instructions for building
an organism by drawing alleles for different traits out of a hat and using the
genotype to decide how to put together a “monster.” In so doing, they were
exposed to the basic principles of genetics (dominant vs. recessive alleles,
complete vs. incomplete dominance, and codominance), and they got to leave with
a cute pipe-cleaner monster too.
For our older visitors we presented actual results from a 23andMe
single nucleotide polymorphism (SNP) report generously provided by one of our
own members (advocacy coordinator Mike Convente). This part of the exhibit
walked visitors through the process of sequencing for SNPs, which are single
nucleotide bases that vary widely between individuals and can give hints about
ancestry, physical traits and possibly diseases, and the implications of
bringing these types of tests to the general public. Right now the Food and
Drug Administration is trying to figure out how to regulate services like these,
which provide genetic information directly to consumers without a qualified
middle-man (such as a doctor or geneticist) to explain the complicated results.
Our exhibit also featured a section entitled “How Myriad
Genetics Almost Owned Your Genes” which highlighted the recent Supreme Court case
brought against a biotech company that wished to patent two genes (BRCA1 and
BRCA2) involved in the development of breast cancer. The genes were discovered
at the University of Utah in a lab run by Mark Skolnick, who subsequently
founded Myriad Genetics. Myriad went on to develop a high-throughput sequencing
assay to test patients for breast cancer susceptibility and eventually obtained
patents for both genes. This was controversial for several reasons: 1. These genes
exist in nature in every human being and are not an invention; 2. The genes
were originally discovered with public funding; and 3. Myriad had a monopoly on
testing for BRCA mutations and prevented universities and hospitals from
offering the tests. Last year in
Association
for Molecular Pathology v. Myriad Genetics, several medical associations,
doctors and patients sued Myriad to challenge the patents and the Supreme Court
decided that patenting naturally occurring genes is unconstitutional (however
synthetically-made complementary DNA is still eligible for patenting). It is
likely that the patenting of DNA sequences will continue to be an issue in the
future considering recent advances in the field of synthetic biology.
