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This guide provides information about DNA including privacy and ethical issues.

What is DNA?

DNA, or Deoxyribonucleic Acid, is a molecule that contains the genetic code of organisms. It determines the structure and function of every cell and is responsible for characteristics being passed on from parents to their children.

Your DNA is what makes you uniquely you.


Additional Information

There are now many at-home genetic testing kits, but some of them are unreliable. People should be careful with these kits, since the tests are essentially handing over a person's genetic code to a stranger. As the popularity of at-home genetic testing kits has increased, so has awareness in the medical community of the need to better inform consumers about the limitations of them.

At least half a dozen well-established consumer DNA testing companies operate according to one similar model: A consumer buys a kit (ranging from $60 to $200), collects a saliva sample, returns the kit to the company in a prepaid mailer, and receives online access to explore the DNA results. Some test manufacturers claim that customers’ DNA samples can reveal everything from their ethnic roots, to how they metabolize caffeine, to their odds for developing Parkinson’s disease. 

Issues To Be Aware Of:

1. Be aware of potential risks, which not only includes the possibility of learning about worrisome health information but also awareness that companies store the data for internal research.

2. All genetic testing companies have privacy and consent rules that need to be read carefully.

3. With any DNA test you order for yourself from home, the results can be fun conversation starters with friends and family, but anyone with a specific heritable health concern should visit a genetics professional for counseling.

4. Three words: Online Data Theft

Yale Medicine

Leicester University geneticist Alec Jeffreys developed a technique called DNA fingerprinting in 1985. This technology, which has become known as DNA profiling, can be used to identify individuals. Modern-day DNA profiling, called STR analysis, is a very sensitive technique which only needs a few skin cells, a hair root or a tiny amount of blood or saliva. 

How can it be used?

  • It can physically connect a piece of evidence to a person or rule out someone as a suspect.
  • Show who your parents, siblings, and other relatives may be.
  • Identify a dead body that’s too old or damaged to be recognizable.

It also has medical uses. It can:

  • Match tissues of organ donors with those of people who need transplants.
  • Identify diseases that are passed down through your family.
  • Help find cures for those diseases, called hereditary conditions.

Science Museum

Many people have a visceral, negative reaction to the idea of a universal DNA database. Their main concern? That a universal DNA database would grossly invade their privacy.

A universal DNA database's benefits in efficiently and effectively solving crimes, exonerating the innocent, and decreasing racial disparities in law enforcement, however, make such a database immensely appealing from a public safety and criminal justice perspective. As of April 2017, the federal DNA database has assisted in more than 358,069 investigations. DNA evidence has exonerated 350 innocents who combined had served 4787 years in prison, sometimes on death row. DNA also enabled law enforcement to identify 149 of the true perpetrators of those crimes, who ‘went on to be convicted of 147 additional violent crimes, including 77 sexual assaults, 35 murders, and 35 other violent crimes while the innocent sat behind bars for their earlier offenses. A universal DNA database could have prevented those 350 false convictions and 147 later violent crimes.

Discussions about universal databases are often halted by invasion of privacy concerns. Are those concerns rational? By analyzing a universal DNA database's design, the probability that imagined abuses would occur, and the invasive investigative techniques the database could end, this article demonstrates that a universal DNA database might actually improve privacy.

I. Current DNA Databases

DNA databases are already maintained by every state and the federal government. All states require DNA samples to be taken from individuals convicted of certain crimes.Twenty-nine states and the federal government even collect DNA from individuals arrested, but not yet convicted, for certain offenses. All states have some process for expunging DNA profiles if a charge is dropped or the individual is acquitted, though most states require individuals to initiate the process. Only 36 per cent of state DNA profiles are incorporated into the national Combined DNA Index System (CODIS) database.

II. Limiting a Universal DNA Database's Privacy-Invasion Potential

A universal DNA database could be designed very similarly to current DNA databases, none of which have been declared unreasonable invasions of privacy. Only three changes are necessary to create a universal database: (a.) include all individuals, not just those convicted or arrested for qualifying offenses; (b.) repeal profile expungement laws; and (c.) better integrate or combine existing databases.

Other Safeguards:

1. DNA is stored in physically secured locations with limited access.

2. Related names are stored separately to prevent tampering and misuse.

3. Database abuses are discouraged through fines, criminal charges and possible jail time.

A universal DNA database with the suggested privacy safeguards would be well protected against abuses, manipulation, and theft. While there is a risk some of these privacy protections could be circumvented with considerable effort, ‘we do not normally ban a technology due to the fear that no law can prevent’ its misuse, and in fact we have adopted beneficial technologies that pose significantly greater dangers to privacy than a universal DNA database.

Journal of Law and the Biosciences, Dec. 2017

Nowadays you can send a vial of your spit in the mail and pay to see how your unique genetic code relates to all manner of human activity—from sports to certain diets to skin cream to a preference for fine wines, even to dating. How accurate are these tests?

There are two potential issues arising from the question of their accuracy. The first is somewhat trivial: Has the sequencing been done well? In critiquing this business, it seems fair to assume the data generated is accurate. But there have been some bizarre cases of failure, such as the company that failed to identify the sample DNA as coming not from a human, but from a dog. One recent analysis found 40 percent of variants associated with specific diseases from “direct to consumer” (DTC) genetic tests were shown to be false positives when the raw data was reanalyzed.

Assuming the tests are done accurately, some discrepancies can still arise from differences in the companies’ DNA databases. Almost every DTC genetic test does not sequence your entire genome, but instead looks at positions in your DNA that are known to be of interest. For anything from your hair or eye color to a specific disease, all of the gene variants only offer a probability of a predisposition toward a certain condition.

When it comes to ancestry, DNA is very good at determining close family relations such as siblings or parents, and dozens of stories are emerging that reunite or identify lost close family members (or indeed criminals). For deeper family roots, these tests do not really tell you where your ancestors came from. They say where DNA like yours can be found on Earth today. By inference, we are to assume that significant proportions of our deep family came from those places. But to say that you are 20 percent Irish, 4 percent Native American or 12 percent Scandinavian is fun, trivial and has very little scientific meaning. We all have thousands of ancestors, and our family trees become matted webs as we go back in time, which means that before long, our ancestors become everyone’s ancestors. Humankind is fascinatingly closely related, and DNA will tell you little about your culture, history and identity.

Scientific American

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