Samuel Qin, an 11th grade student at Shenzhen College of International Education, has been a passionate student of life sciences since he was a child, and has spent his vacations visiting biology laboratories at the Institute of Genetics and Development of the Chinese Academy of Sciences, Stanford University, UC San Diego, UC Riverside, and Wuhan University, among other institutions. Since entering high school, he has a keen interest in the academic study of biology, and while balancing the refinement of the whole subject, he has already finished the university biology-related courses on his own and won gold medals in several biochemistry international competitions and Olympiads.
My interest in founding the website has all started in last
year’s summer. I met Professor Shen graduated from Harvard University. He is a
genetic counselor who dedicated to help couples that are puzzled by the genetic
disorders that their children suffer from. I was lucky enough to audit one of
his remote counseling with one of those desperate couple: they had three
children in total, and none of them made it three days after they born. Before
coming to Professor Shen, they thought it was the hospitals’ responsibility:
They even tried to sue the hospitals, even though they are the top ones in Hong
Kong. After weeks of analysis, Professor Shen told them: “the babies all have
the same type of gene mutations that disabled them to synthesize lactose by
themselves. After using up the lactose from their mother, they died almost
immediately.”
This is the first time I feel that such
miserable misshapen is so close to me. In 2018,
approximately 350 million individuals worldwide currently live with rare
disorders and roughly 80 percent of these rare disorders have a genetic basis,
and a staggering 95 percent of them lack any approved treatments sanctioned by
the FDA. I was shocked by these astonishing numbers, realizing that these
disorders take place more frequently than we thought yet gaining little
attentions and proper treatments. Although the number may seem to be an only
small proportion of the world population, the families of these patients are
also living in pain, making rare genetic disorders a non-negligible. The other
major problem faced by the whole mankind is that the importance of genetic
counseling is not understood by most of the people. Professor Shen told me that
90% of his cases are postnatal, which means that misery has already happened to
the children and the family. Too late. Only when people know they should check
whether they carry genes that might lead to the genetic disorders can the cases
of genetic disorder decrease because of preproduction interference. My interest
towards genetics soars to a peak, driven by my responsibility to help folks
suffering from rare genetic diseases. Therefore, I have created this website,
aiming to popularize the knowledge of genetic diseases for the general readers,
provide channels for genetic counseling and volunteer activities to help
patients in a realistic sense. I hope that this website can raise people's
awareness of genetic diseases, thus gathering attention on this issue that is
ignored by many people. As the name of the website suggests, we should really
start to pay attention to genetic diseases.