View Full Version : PoBI team's primary outcomes 'are not intended' for those in Genetic Genealogy

11-05-2014, 03:31 PM
The most recent PoBI Hoopla is here: https://www.youtube.com/watch?v=_yrD5mUGlC4

Some on this website think that the PoBI / GWAS people are friends of the Genetic Genealogy community .... they are not and alot of people fail to dig into the background for PoBI which appears to more Medical Genetics than Genetic Genealogy.

The PoBI team's primary outcomes 'are not intended' for those in the Genetic Genealogy non-profit community.

The PoBI team's primary outcomes 'are intended' for large companies who are in the for-profit Pharmacogenetics community (http://en.wikipedia.org/wiki/Pharmacogenetics). The PoBI lead funder is the Wellcome Trust / Burroughs Wellcome.

The PoBI team has likely used misguided ethics & misguided informed consents to entice people to provide a DNA sample for this GWAS and then years later will charge them an arm and a leg to get the right medicine to stop their cancer or AIDs or whatever. A case in point is Wellcome and the AIDs drug AZT. http://www.nytimes.com/1989/08/28/opinion/azt-s-inhuman-cost.html

AZT's Inhuman Cost NYT Published: August 28, 1989

AZT is the only drug approved for use against AIDS. It's now known that AZT also postpones the onset of AIDS in people infected with the virus. Yet there's a massive obstacle to wider use of this life-saving drug - its extraordinary cost. At $8,000 a year for users, AZT is said to be the most expensive prescription drug in history.

Some 35 percent of AIDS patients have either no health insurance or policies that do not pay for drugs. Many might be unable to afford AZT without the help of a temporary Government program that ends in September. All Americans bear the high cost of the drug, in taxes or insurance premiums.

There's another reason to want AZT to cost less. If AZT reduces an individual's infectiousness, as is possible though not yet proved, wide use of the drug might help sharply curb the epidemic. The present high price can only impede such efforts.

What makes the cost of AZT hard to swallow is that all the invention and much of the risk was undertaken by the US Federal Government and other Governments.

The maker of AZT, the Burroughs Wellcome Company of North Carolina, refuses to state its costs, but it's hard to believe they reached a fraction of this sum. AZT was first synthesized in 1964, as a possible anti-cancer agent, by Jerome Horwitz of the Michigan Cancer Foundation. In 1984, Samuel Broder of the National Cancer Institute encouraged companies to submit possible anti-AIDS drugs for screening by a special test developed in his laboratory. Burroughs Wellcome sent in AZT, a compound it happened to have on its shelves after studying it for another purpose.

Since few other pharmaceutical companies were much interested in AIDS drugs at that time, Burroughs deserves credit for pressing ahead. But to encourage it to take even this chance, the Government allowed it to apply for full patent rights, despite the heavy Federal contribution. The Government then conducted or supported many of the clinical tests of AZT, and for early production it provided all the thymidine, a critical ingredient.

Burroughs at first justified its astoundingly high price for AZT by noting rival drugs would soon be on the market. But the rival drugs still haven't appeared. Burroughs did reduce the retail price from $10,000 to $8,000 in 1987. The company now says the present 40,000 AIDS patients are the only customers it can be sure of. Every epidemiologist expects the toll to rise far higher.

As other promising AIDS drugs reach the market, competition will force the price of AZT down. But that may be many months ahead, and meanwhile Burroughs's apparent profit bears little evident relation to its risks.

Burroughs Wellcome is the subsidiary of a British company that is 75 percent owned by a charitable foundation, the Wellcome Trust. Wellcome's trustees are academics, many of them retired, who distribute the revenues for medical research. But it's a strange kind of charity that cordons off people already suffering from a terrifying disease.

11-13-2014, 02:57 PM
Yes, the Wellcome Trust are attempting to establish a control dataset of the British public to see if certain diseases which have a genetic cause have distribution within the population in order that the Nation Health Services can be targetted in those areas. All the early stuff about the MC1R gene was about targetting melanoma. The POBI was a way of getting the public to donate samples but one of those tasked with obtaining samples at the events, Tammy Day, has the email address oncology.ox.ac.uk.

The Wellcome Trust are not for profit, they are a charity and rely on grants. The initial grant for this, back in something like 2004 was 3m euro. Obviously pharma companies like to donate to the research because it helps them quantify the value of certain markets.