Because of this:
(1) Deciphering the sequence of the human genome and other advances in genetics open major new opportunities for medical progress. New knowledge about the genetic basis of illness will allow for earlier detection of illnesses, often before symptoms have begun. Genetic testing can allow individuals to take steps to reduce the likelihood that they will contract a particular disorder. New knowledge about genetics may allow for the development of better therapies that are more effective against disease or have fewer side effects than current treatments. These advances give rise to the potential misuse of genetic information to discriminate in health insurance and employment.
(2) The early science of genetics became the basis of State laws that provided for the sterilization of persons having presumed genetic `defects' such as mental retardation, mental disease, epilepsy, blindness, and hearing loss, among other conditions. The first sterilization law was enacted in the State of Indiana in 1907. By 1981, a majority of States adopted sterilization laws to `correct' apparent genetic traits or tendencies. Many of these State laws have since been repealed, and many have been modified to include essential constitutional requirements of due process and equal protection. However, the current explosion in the science of genetics, and the history of sterilization laws by the States based on early genetic science, compels Congressional action in this area.
Everybody needs something like this:
legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.
And beyond "simple" discrimination, there's going to be stuff like this:
Consider a not-too-distant future in which personal genomes are readily available. For those with relations affected by a serious medical condition, this will conveniently provide them with any genetic test they need. But it will also offer the rest of us information about our status for these and other, far less serious, autosomal recessive disorders that might similarly manifest themselves in children if we married a fellow carrier.
A bioinformatics program running on a PC could easily check our genomes for all genes associated with the autosomal recessive disorders that had been identified so far. Regular software updates downloaded from the internet - like those for anti-virus programs - would keep our search software abreast of the latest medical research. The question is, how potentially serious does a variant gene's effects have to be for us to care about its presence in our DNA? Down to what level should we be morally obliged to tell our prospective partners - or have the right to ask about?
And just when is the appropriate moment to swap all these delicate DNA details? Before getting married? Before going to bed together? Before even exchanging words? Will there one day be a new class of small, wireless devices that hold our personal genomic profile in order to carry out discreet mutual compatibility checks on nearby potential partners: a green light for genomic joy, a red one for excessive recessive risks?
Given the daunting complexity of the ethical issues raised by knowing the digital code of life in detail, many may opt for the simplest option: not to google it. But even if you refuse to delve within your genome, there are plenty of others who will be keen to do so. Employers and insurance companies would doubtless love to scan your data before giving you a job or issuing a policy. And if your children and grandchildren have any inconvenient or expensive medical condition that they have inherited from one side of the family, they might like to know which - not least, to ensure that they sue the right person.
Another group that is likely to be deeply interested in googling your genome are the law enforcement agencies. Currently, DNA is used to match often microscopic samples found at the scene of a crime, for example, with those taken from suspects, by comparing special, short regions of it - DNA "fingerprints". The better the match, the more likely it is that they came from the same individual. Low-cost sequencing technologies would allow DNA samples to be analysed completely - not just to give patterns for matching, but even rough indications of physical and mental characteristics - convenient for rounding up suspects. This is a rather hit-and-miss approach, though, where success depends on pulling in the right people. How much more convenient it would be if everyone's DNA were already to hand, allowing a simple text matching process to find the guilty party.
Nobody ever said digital DNA was going to be easy.
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