Selling Your Genetic Information: Is it Ethical?

Genetic data has become a commodity. There is now a sizeable market for genetic information just like there is for navel oranges and consumer electronics…but what are the ethical ramifications?

Scientists and philosophers all over the globe continue to grapple with the complex question surrounding the recent glut of readily-available genetic data. When it comes to selling personal genetic data, is it ever ethical?

 

 

Debit card swiping on pos terminal

 


The Science Behind the Market

The field of genomics has exploded over the past decade and along with it, tangential disciplines such as proteomics. Progress can be attributed to a number of different factors but certainly without the current spate of efficient, high-throughput testing technology, much recent scientific advancement would have been impossible.

Genetic information is easier to come by than ever before, especially for individuals. The DTC (direct-to-consumer) genetic testing market has topped $100m and is continuing to grow exponentially. The average American now has unprecedented access to their own genetic data – encouraged by the 2008 Genetic Information Nondiscrimination Act – and a bevy of enticing options for said information including personalized medical attention and even profit.

 

Ethical Quandaries Surrounding Genetic Data

One of the longstanding arguments against commodifying genetic data is that it could open Pandora’s Box to selling all kinds of biological components such as organs or even limbs. In reality, this argument is a bit hyperbolic because biological commodities such as plasma and sperm have been sold commercially for decades. Strong regulations are already in place to prevent an organ market, for example, and there is much thoughtful conversation surrounding similar regulations for genetic data, too.

The harder-to-answer question surrounding genetic data is actually a question of privacy. How much control should consumers ultimately have over their personal genetic information, and are they maintaining it? There are  significant issues swirling around direct-to-consumer genetic testing, anonymization, and resale; with a discipline as new as genetics, it will likely take years to iron out the complex privacy concerns both consumers and researchers can’t seem to shake.

 

Benefits of Genetic Information Sharing

If the sale of genetic data is so fraught with controversy, why doesn’t the government simply shut it down? The answer lies in the myriad applications aggregated genetic data has within research and medicine, particularly within the field of pharmacology. Proponents argue that when consumers are allowed to sell their genetic data to scientific firms who use that data to develop superior medical solutions, everyone wins.

It’s impossible to know how the genomics market will evolve over the next ten or even two years. What is known is that detailed genetic data is irreplaceable for advancing the science of gene-therapy which is itself responsible for incredible breakthroughs in everything from cancer treatment to disability research.

Genetic information is no longer the “next frontier,” it is the “now.” Researchers, regulators, and the general public will likely continue to grapple with the complicated ethical questions surrounding the use and dissemination of this data. It’s important to remember, though, that people once feared scientific breakthroughs like electricity and cell culture, too.


IMCS is a leading biotechnology firm advancing the science of proteomics. Our IMCStips are based on patented, dispersive pipette extraction technology to enable rapid purification of biomolecules from complex samples. Applications range from antibody enrichment to recombinant protein purification. The platform is fully integrated with Hamilton Robotics for high-throughput and consistent performance. This provides researchers with a variety of tools that enhance downstream testing in the proteomics sector.

 

Want to learn more? Reach out to the IMCS team today.