Information Overload? as Genetic Testing Kits Sold Directly to Consumers Gain Popularity, Medical Professionals and Lawmakers Wonder If More Regulation Is Needed

By Goodwin, Kristine | State Legislatures, September 2008 | Go to article overview

Information Overload? as Genetic Testing Kits Sold Directly to Consumers Gain Popularity, Medical Professionals and Lawmakers Wonder If More Regulation Is Needed


Goodwin, Kristine, State Legislatures


Information is power, the adage goes, and in the brave, new world of direct-to-consumer genetic testing, that information has the potential to help people lower their odds for developing disease.

"In the not too distant future, we expect that physicians will be able to look at patient genetic profiles and assess the best health-care plan," says Anne Wojcicki, co-founder of the California-based genetic start-up 23andMe.

Today, consumers with curiosity, Internet savvy and a credit card can go online to one of dozens of direct-to-consumer genetic testing companies, and for a few hundred to a couple of thousand dollars find out if they are predisposed to certain cancers, Alzheimer's, diabetes and the like. The direct-to-consumer umbrella is a large one, with some companies offering genetic tests--like those that determine whether a person is a carrier of a gene for cystic fibrosis, for example--and others offering personal genomic profiles that predict whether a healthy individual has a genetic mutation that puts them at risk for disease. Still others in the market provide nutritional profiles based on a person's genes and another subset specializes in using genes to determine ancestry.

"There are tests that are beneficial," says Gail Javitt, a law and policy director at the Genetics and Public Policy Center at Johns Hopkins University, but there is a lack of uniform standards for measuring whether a test is valid or useful. "Right now," she says, "there is not a process for ensuring that those standards are being met, and as a result, consumers are vulnerable."

[ILLUSTRATION OMITTED]

The situation has led to a patchwork of laws around the country and a quandary for policymakers and consumers alike: How to sift through the plethora of companies and technologies and know which tests and services deliver on their promises.

Michael Watson, executive director of the American College of Medical Genetics, worries some direct-to-consumer genetic tests trivialize a complex and nuanced issue. Since many diseases have unknown causes, he says, people might be misled into thinking that a genetic test alone can determine their risk of getting an illness. Factors such as family history, lifestyle and environment also can play a role. Scientists don't know exactly how genes and environment interact, and there is no genetic smoking gun for many of the conditions being tested.

What's more, Watson points to "a lack of understanding about the implications of a positive test result." Put simply, having a higher risk of developing diabetes doesn't mean that you're going to get it, and conversely, a person without an elevated risk has no guarantee he's immune.

"Many of the DTC companies ... draw no lines as to how strong the genetic influence needs to be for them to say it is diagnostic versus a low-level risk factor," Watson argues.

Genetic tests are not new. How they are marketed to the public, however, is.

"Direct-to-consumer is just a method of marketing the test," says Javitt. The technology is the same whether the test is administered at home or in the doctor's office. With direct access to testing, there may not be a doctor or genetic counselor involved to "provide a gatekeeping function to make sure the right people get the right tests and they understand what the tests tell them."

AN EVOLVING INDUSTRY

George Church thinks that in a few years your personal genome will be a household staple, as common as the flood and fire insurance that you hope to never use. Church, a professor of genetics at the Harvard Medical School and founder of the Personal Genome Project, envisions people will pay for this information because it will help them stay healthy and extend their lives.

"Nobody wants to hear that they have cystic fibrosis or Huntington's disease," Church argues, but they hope to have the information on file in case they need it some day. …

The rest of this article is only available to active members of Questia

Sign up now for a free, 1-day trial and receive full access to:

  • Questia's entire collection
  • Automatic bibliography creation
  • More helpful research tools like notes, citations, and highlights
  • Ad-free environment

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
One moment ...
Default project is now your active project.
Project items

Items saved from this article

This article has been saved
Highlights (0)
Some of your highlights are legacy items.

Highlights saved before July 30, 2012 will not be displayed on their respective source pages.

You can easily re-create the highlights by opening the book page or article, selecting the text, and clicking “Highlight.”

Citations (0)
Some of your citations are legacy items.

Any citation created before July 30, 2012 will labeled as a “Cited page.” New citations will be saved as cited passages, pages or articles.

We also added the ability to view new citations from your projects or the book or article where you created them.

Notes (0)
Bookmarks (0)

You have no saved items from this article

Project items include:
  • Saved book/article
  • Highlights
  • Quotes/citations
  • Notes
  • Bookmarks
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

(Einhorn, 1992, p. 25)

(Einhorn 25)

1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited article

Information Overload? as Genetic Testing Kits Sold Directly to Consumers Gain Popularity, Medical Professionals and Lawmakers Wonder If More Regulation Is Needed
Settings

Settings

Typeface
Text size Smaller Larger Reset View mode
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

Full screen

matching results for page

Cited passage

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn, 1992, p. 25).

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences."1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited passage

Welcome to the new Questia Reader

The Questia Reader has been updated to provide you with an even better online reading experience.  It is now 100% Responsive, which means you can read our books and articles on any sized device you wish.  All of your favorite tools like notes, highlights, and citations are still here, but the way you select text has been updated to be easier to use, especially on touchscreen devices.  Here's how:

1. Click or tap the first word you want to select.
2. Click or tap the last word you want to select.

OK, got it!

Thanks for trying Questia!

Please continue trying out our research tools, but please note, full functionality is available only to our active members.

Your work will be lost once you leave this Web page.

For full access in an ad-free environment, sign up now for a FREE, 1-day trial.

Already a member? Log in now.