iBiology has an eye-opening video that we invite you to watch called, Neurodegenerative disease: The Coming Epidemic. In it, Dr. Gregory Petsko discusses how our population is aging and how with that comes an increase in neurodegenerative diseases, such as Parkinson’s. He makes a clear case for the need for research dollars. He also explains that while most neurodegenerative diseases “arises sporadically, about 10% has a direct genetic cause.” It is the genetic cause and how researchers are studying it that is incredibly exciting.
He introduces us to Douglas Whitney of Port Orchard, Washington whom he calls “the most interesting man in the world.” He tells us that about half of the Whitney family has died in their 40s or 50s because of a genetic mutation that causes Alzheimer’s disease. Mr. Whitney has the mutated gene. By all accounts, he too should have died from Alzheimer’s. However, at age 67 he is still alive and shows no signs of the disease. The question is why. What can researchers learn from what else Doug Whitney may have in his genetic make-up? You can watch the video below and find additional information, including more videos in the series and related articles, here .
After watching the video, you may find yourself wondering how many other Douglas Whitneys may be among us. In April 2016, The New York Times reported in an article entitled, People Who Avoided Illness Could Be Key in Treating Those Who Didn’t that “researchers searched databases containing genetic sequences from nearly 600,000 healthy adults” and discovered 13 who may hold clues “to treating others who did not escape the gene’s effects.” The excitement of those 13 was very short lived because while the participants in the databases gave their DNA, they also signed an agreement that they would remain anonymous. In short, it was back to square one.
This, however, sparked the idea for The Resilience Project which “aims to discover hidden factors that protect people from disease.” The Project is searching for people worldwide who, “according to medical textbooks, should be sick but have somehow escaped typical signs and symptoms of the disease.” For this project, anyone who agrees to have their DNA sequenced also agrees to be contacted by researchers if they have a mutated gene that should have made them ill but did not. This Project presents the opportunity to open the door to potentially life-save treatments! Currently you can sign up at The Resilience Project, and we encourage you to do so. With some luck, we may find a few genetic winners among us to help researchers pave the way to a cure.
— Margaret Tuchman and her blogging partner Gloria Hansen
Dr. Petsco makes an economic case for the need for more research dollars. The global data he presented was flawed in respect to the incidence of Alzheimers, PD and ALS insofar as non-acute illnesses in the rest of the world are not quantatatively represented if they don’t result in death. In fact, the diseases showcased are not treated due to economics.
Parkinsonism like capitalism has many moving parts. Pallitive treatment research is driven by economics…without a sufficient market no research is done. Governments in the present political climate find it difficult to fund research in neurological diseases that have little economically obvious profit potential but can further the knowledge of the mechanisms of cause.
Dr. Petsco’s talk while significant is a sales talk to further research grants to his sponsor and encourage other neuroscientists to join him in the cause.
The Resilience Project raises significant questions and answers about genome sequencing. At present genome sequencing and the resulting research is in its infancy with too few profiles in the database. Privacy concerns and cost limit universal sequencing.
Genone mapping can indicate trends but an associated medical history can discover the unknown 10% that can find a cause. In the age of Twitter you can’t produce a lifetime of medical history in 140 characters so databases have to accomodate much more than that to be useful for researchers.
Collected genome profiles are available from government agencies that have not been added to the database. See the article http://www.nbcnews.com/news/other/your-dna-police-database-f6C10617124
The Parkinson Alliance has been a pioneer in funding and desiminating the information and deserves our support.
John Cottingham
Thank you for your comments, John. How we look at DNA, how it’s used, and how it should ethically be used, is all food for thought. It’s a topic ripe for long discussion among many different arenas. — Marge & Gloria