Discuss three issues associated with the Human Genome Project and genetic testing that might have either ethical, legal, or social implications in the future

Question

What will be an ideal response?

Answer 1

Background:
ELSI focused on several issues, including: 1) privacy and confidentiality of genetic information;
2) fairness in the use of genetic information by insurers, employers, and others; 3) discrimination caused by someone's genetic status; and 4) use of genetic information in reproductive decisions.
The attention given to these potential problems by ELSI and other forums helped formulate and pass legislation about the use of genetic information. The GINA prevents health insurance companies and employers from discriminating based on genetic information and prohibits them from asking for or requiring a genetic test.

Although GINA represents a significant step forward, other issues remain unresolved. Should genetic testing be done even if there is no treatment available? Should we test children for diseases that will not develop until adulthood? Will patenting DNA sequences deter the open development of products and make the costs of some genetic tests prohibitive?

The availability of exome sequencing raises many questions. If whole exome sequencing reveals that you are at risk for developing heart disease, breast cancer, or diabetes, it may influence you to adopt lifestyle strategies that can lower those risks. On the other hand, if sequencing shows that you will develop a devastating and fatal disease in middle age, should you inform your siblings, who may also be at risk for the disease? Should you have your children tested to see if they will develop this disorder as adults?