If you’ve ever seen the 2002 movie, Minority Report you would have heard of the dystopian concept of arresting people before they commit crimes. Opponents of genome sequencing fear that if used the wrong way, this medical practice can become discriminatory.
What is Genome Sequencing?
Due to advancements in technology, an individual’s whole genome could be sequenced in a matter of days. Depending on the company, it can take less than three days. Illumina is one of the leading companies that makes up approximately 60% of the sequencing community. Sampling for genetic testing involves cheek swabbing or blood tests.
Using the samples, the DNA is sequenced to determine the order of bases by Next-Generation Sequencing (NGS). Here, the DNA fragments collected have known sequences added to the end and are rapidly sequenced by NGS. Afterward, the products are put in the correct order by aligning with the reference genome. Now that we have the genome of the individual, through data analysis, we can identify insertions, deletions, and other mutations in the nucleotide sequence. The locations where the mutations are found are recorded and analyzed by a computer software to determine if the mutation is likely to cause a disease. The mutation is typically compared with past research papers about the variant and its correlation with the disease.
The Issue
There have also been some controversies surrounding whole genome sequencing, including privacy rights and discrimination. Opponents of whole genome sequencing worry about how the data is stored and used, especially in criminal cases. When it comes to enacting criminal justice, having the information of innocents could be viewed as an invasion of privacy. As Teneille R. Brown says, “The larger threat to genetic privacy comes from shoddy consumer consent procedures used by DTC genetic companies, poor data security standards, and user agreements that permit rampant secondary uses of the users’ DNA and data.” When taking private genome tests, the information gathered may be disclosed to second or third parties with the permission of dubious and lengthy private policies.
As genomic information can be quite sensitive, proper storage and secrecy regarding the results would be beneficial. Critics worry that an individual’s genetic predisposition being public knowledge can lead to hiring bias in the workforce along with the denial of job benefits. Interviewers may feel inclined to hire someone who does not have a genetic history of incurable life-threatening diseases, which is problematic because genome sequencing is a predictive test. There is no guarantee that the sequenced individual will develop the detected diseases.
Insurance companies already have different rates depending on risk factors and the health of the insured individual. Luckily, the Genetic Information Nondiscrimination Act (GINA) prevents medical insurance companies from raising rates. However, life insurance and disability coverage are not impacted by GINA. Even though GINA declares discrimination in the workforce and insurance illegal, genomic prejudice still exists. Moreover, the threat of having a genetic predisposition and the likelihood of getting a disease can take a toll on an individual’s mental health. As a whole, without stricter privacy laws, genetic testing could have a substantial detrimental effect on our daily lives.
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