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This story is about Who monetizes your DNA?, an episode of Business Daily on BBC World Service. It was presented by Manuela Saragosa and produced by Laurence Knight. To listen to more episodes of Business Daily, click here. right here. Adapted by Philippa Fogarty.
If you have already sent your DNA to an ancestry or health screening company for analysis, it is likely that your DNA data will be shared with third parties for the purpose of testing. medical research or even for the resolution of crimes, unless you have specifically asked the company not to do so.
The question was well understood at the end of January when it appeared that the genealogical genealogy company FamilyTreeDNA was working with the FBI to test DNA samples provided by the police to identify the perpetrators of violent crimes. 23andMe, another DNA testing company, has signed a $ 300 million contract with the pharmaceutical giant GSK to help it develop new drugs.
But do customers know that third parties can access their genetic data for medical research? And does this kind of rapprochement bring benefits – or should we care?
Opting in
23andMe is a Californian company that analyzes the DNA of its customers and provides them with reports on their ancestors and their health. He says he has more than five million clients, more than 80% of whom have agreed to participate in his research, creating a huge pool of genetic data.
Anne Wojcicki, CEO of the company, said in a blog post last year that 23andMe's genetics research and GSK's expertise in drug development would accelerate the development of scientific breakthroughs.
So, with this agreement, has the company changed its goal of monetizing its DNA database?
"I really would say no," said Kathy Hibbs, legal and regulatory manager at 23andMe. "We see our company as a virtuous circle. We have consumers who are interested and motivated by their own health – how our genetics could affect our risk for certain conditions. "
According to her, the concept is to make discoveries that give customers more information that they can use to inform their health decisions.
It rejects the idea that customers do not understand if they agree to share their data, relying on a "very explicit" three-part consent document that asks if customers want to consent to a search and if they agree to this research is shared. with third parties. The key, she says, is that their research relies on people answering poll questions. "Their genetic information, if they do not provide the information from the survey … really do not interest us. So, not only do they knowingly consent, but they must also participate in these studies. "
According to Hibbs, the partnership with GSK will enable a much larger pool of researchers to study the data they have. His company can also work with academics and public institutions if there is no conflict of interest with GSK, she adds.
& # 39; Bigger & # 39;
Of course, many countries are developing public genetic databases, as opposed to private databases owned by companies such as 23andMe. In the UK, this is done by Genomics England, created by the government's Ministry of Health and Social Affairs.
He manages the 100,000 genome project, which aims to sequence the genomes of patients with rare disease and their families, as well as cancer patients. All patients are in the public health service of the NHS and the focus is on improving treatment rather than developing new, cost-effective drugs.
Mark Caulfield, chief scientist at Genomics England, says the project has many benefits, citing the example of a 10-year-old girl with recurrent chickenpox.
This is not only a transformation for the individual but also a huge saver for the NHS – Mark Caulfield.
"We discovered a change in his DNA that altered his immune system. This allowed us to choose the bone marrow transplant that healed her from her condition, "he says. "It's not only a transformation for the individual, but it's also a huge money-saver for the NHS, as it was regularly admitted and benefited from intensive care."
He says that genomics can help build a much more detailed picture of a person's life course – which could help scientists begin to identify people at risk of contracting the disease.
Everyone in the database adheres on the basis of informed consent, involving written documents and consultation with a health professional. The organization works with other countries and with private companies, which Caulfield emphasizes as having advantages.
In cases where patients suffer from very rare diseases, getting an answer may depend on sharing data with other countries, he said. In the meantime, interacting with private companies that develop drugs can help make an extremely expensive process less expensive.
"Many of us are exposed to the risk of an adverse reaction because of our genetic makeup. And since 80% of drugs fail during development, using the genome to try to obtain safer drugs at the first attempt could reduce the cost when they are passed on to the health system. "
People who can afford to buy these private diagnostic tests look alike in many ways – Kayte Spector-Bagdady
He emphasizes the key role played by the identification of the gene responsible for high familial cholesterol, a disease that causes heart disease at a young age, in the development of the drug to treat it.
"[Drug company] Amgen believes that genomics work has shortened the development of this drug by three years and its entry into clinical trials benefiting patients. If I could bring something alive that would avoid death or harm to someone much faster through this public-industry partnership, then I think it's a greater good for society. "
Why diversity is needed
It should be noted that the 100,000 genome project sequenced exactly that: 100,000 genomes. This is a fraction of the information held by the 23andMe database. Kayte Spector-Bagdady, an assistant professor at the University of Michigan's School of Medicine, worries private companies that dominate DNA databases.
"There is a potential for data monopolies and the private sector acting to exclude public data banks," she says. She cites the example of Myriad Genomics, who has obtained a patent on two genes associated with an increased risk of breast and ovarian cancer. This meant that he could monopolize the tests, which opponents argued, stifled research and blocked the development of less expensive tests.
In 2013, the United States Supreme Court declared the patent invalid. But because they had a monopoly for so long, Myriad still had the best set of data. Now, says Spector-Bagdady, third parties are working together to "compete with the huge Myriad dataset."
She says that profit considerations can skew the search. "If you think of these companies as 23andMe, their assessment is not based on their ability to sell $ 200 test kits; their assessment is based on their ability to collect and sell data. These data become one of their main business assets and this asset is protected as any other asset would be. "
Apart from consent issues, his biggest concern is that the way data is collected means that segments of society are not represented.
"The types of people who can afford to buy these private diagnostic tests are similar in many ways – they are often very well educated, often Caucasian, often wealthy," she says. "So when we feed private datasets with this type of people, even though we are doing good research that is making great progress in medicine, the types of communities at which these advances will be applied to the data sets to begin. "
She believes that creating more diverse and accessible public databases, such as the All of Us research program launched by the Obama administration, would better serve society.
"The problem is that they have only 150,000 people to date and they've been doing it for years," she says. Part of the problem is that public programs must meet the federal government's stringent consent requirements, making recruitment of participants more costly and time-consuming.
23andMe indicates that although its percentage is generally more European, its population includes only the largest cohorts of traditionally underrepresented researcher populations, including African Americans, Latinos and others. He also participates, he says, in projects to fill gaps in genetic registrations.
The market for consumer genetic testing is booming, KPMG noted in a report last year. However, the debate over privacy, consent, diversity and benefits can only deepen as more of us choose to discover our deepest biological secrets.
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