A new study published in PLOS ONE finds that over 50% of Americans will exchange genetic data for financial compensation.
Direct-to-consumer (DTC) genetic testing is on the rise, and there are a variety of companies now offering an increasing number of analytical tests based on contributed genetic data. These tests, often being outside of the clinical remit, tend to come with an associated cost.
As more individuals are engaging with DTC genetic testing, a myriad of questions continue to arise relating to data privacy, storage and usage. Consumers are keen to understand how companies are applying their data, and how they’re profiting from it.
A recent example of how DTC genetic testing data can be used came from 23andMe. At the start of the year the company announced that they have generated a novel biologic drug for the treatment of multiple inflammatory diseases. The drug has been created utilizing the genetic data contributed by 23andMe’s customers.
Technology Networks spoke to 23andMe, who said “More than 80% of 23andMe customers consent to participating in research. It’s this genetic and phenotypic research that can help provide new insights into patterns of disease and causes, and how they can be treated. Genetic information can contribute to new target drug discovery and development of new disease insights, medicines and possibly cures.”
In a new study published in PLOS ONE, researchers from Penn State and Cornell University endeavoured to dig deeper into the motivations of individuals contributing genetic data. They used a survey to do so.
“As human genomic data collection rises, the organizations responsible for managing these data are developing and refining their internal policies and protocols related to data end uses, transparency and security, for example,” said Forrest Briscoe, Professor of Management and Organization, Penn State.
The survey was formulated from in-depth interviews with both officials and employees that were linked to genomic governance at 12 organizations. The sample included 2,020 individuals, recruited through Qualtrics.
The participants were provided with an imaginary situation:
Imagine that today you are presented with an opportunity to provide your DNA data to Genetic Data Inc. [one of five similarly named fictitious companies], to be used in a biomedical research program. They can obtain your DNA data if you provide them with a small saliva sample. Genetic Data Inc. is a U.S. for-profit technology corporation. Based on this information, and what you have just learned about DNA data, how willing would you be to provide your DNA data to Genetic Data Inc.?
Based on this scenario, participants were provided with four response option to choose from:
- Willing as a charitable donation
- Willing if I’m paid at least a certain amount of money
- Unwilling, at least for now
- Unwilling, now or ever
The individuals that selected option two, “willing if I’m paid at least a certain amount of money”, were then asked how much they expected to be paid.
All study participants were also asked how much they would be willing to pay the company to receive a report back on the data. The report would provide information pertaining to their ancestry and their risk propensity for 20 different genetic-based diseases.
Over 50% of Americans will exchange genetic data for financial compensation
The study results found that 50.6% of participants were willing to contribute their data only if they were compensated financially. The median net expected payment for those who wanted to be compensated in this manner (once the amount that participants expected to pay for a report on the data was removed) was $95+.
Thirty-seven-point eight percent were not willing to provide the data regardless of any compensation. Of the data Bruscoe said: “Our results suggest that as public awareness grows regarding the commercial aspects and privacy issues of genomic databases, individuals’ expectations for compensation in exchange for data provision may rise.”
As part of the survey the researchers also explored willingness to provide genomic data based on different governance policies. They found that the three policies that most increased willingness to contribute data include:
- Ability for data providers to request that their data be deleted
- Assurance that providers’ data would not be sold or shared beyond the organization collecting it
- Assurance that companies’ re-use of provider data would require specific permissions
Whereas the three policies that decreased willingness were:
- Selling database access to pharmaceutical firms
- Providing data to the federal government
- Retaining data indefinitely without a specified date for destruction
Bruscoe commented: “A common denominator across our governance policy findings is a preference for restrictions on sharing or reuse, unless permission is specifically granted by the individual.”
“Our findings offer a forward-looking window on individual preferences that can be useful for institutions of all types as they develop governance approaches in this area of large-scale data sharing,” he concluded.
Reference: Forrest Briscoe, Ifeoma Ajunwa, Allison Gaddis and Jennifer McCormick. (2020). Evolving public views on the value of one’s DNA and expectations for genomic database governance: Results from a national survey. PLOS ONE. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0229044.