Genetic testing and consumer rights

By John Breyault, Vice President of Public Policy, Telecommunications and Fraud

It seems that not a day goes by without headlines announcing another scientific breakthrough related to the study of genetics. The science of genetics has undoubtedly played a key role in addressing many of the diseases that afflict millions of consumers. In addition, genetic testing may help consumers understand the diseases they may be predisposed to and take appropriate action.

A natural worry for consumers, however, is how this most personal of information could be misused, particularly by employers to deny them a job or health insurance companies to deny coverage or make coverage more expensive.

Fortunately, consumers have protections. First, the Health Insurance Portability and Accountability Act (HIPAA) makes it illegal for health insurance companies to exclude individuals from group coverage due to genetic predisposition to disease. The law also states that genetic predisposition to a disease does not constitute a preexisting condition without a current diagnosis.

Consumers can also rely on the Genetic Information Nondiscrimination Act, which prohibits health insurance companies from denying coverage to individuals or raising premiums because of genetic predisposition to disease. The law also prohibits employers from basing decisions on hiring, firing, job placement, or promotions on genetic information.

The Council for Responsible Genetics, one of the leading public interest groups focused on genetics and biotechnology, has developed a very informative Consumer Genetic Privacy Manual, which gives consumers an excellent overview of the issues surrounding genetics and consumers. In particular, consumers concerned about protecting their genetic information from prying eyes should refer to the “Tips for Protecting Your Genetic Privacy” section of the Manual.

Privacy is going to be one of the big issues facing consumer and public interest advocates in the coming year. Perhaps no more personal form of information is a person’s genetic information. It is for this reason that we will be monitoring this issue closely in the months to come.

Advocates on board with ‘Do Not Track’

NCL supports the Federal Trade Commission’s (FTC) proposal to allow consumers to block advertisers from tracking them online. As David Vladeck, the Director of the FTC’s Bureau of Consumer Protection testified on December 2, industry self-regulation has to date failed to adequately protect consumers’ privacy. The FTC has proposed a “uniform and comprehensive consumer choice mechanism” for online behavioral advertising, likely as a feature of Internet browsers. Advocates at the National Consumers League support the FTC’s proposed rule for a simple reason: consumers want to control their environment easily and persistently. These days, the average consumer is barraged online with marketing offers from companies using tracking technology who think they know what their customers want — or are trying to predict it. We agree with the FTC’s position that such technology can and should be implemented in such a way that it does not undermine the advertiser-supported business model that has helped give consumers such a treasure trove of free and low-cost content on the Internet.

The beauty of this so-called “Do Not Track” technology is that doesn’t require maintenance of lists; it just lets online advertisers know not to track you. Experts say the technology for Do Not Track is easily adapted to smartphones, tablets, and other mobile devices. We agree with Beth Givens at the Privacy Rights Clearinghouse, who said: “online tracking is inherently offensive to people. The notion that there are electronic eyeballs following you as you surf the Web frankly bothers people.”

NCL will be following closely the debate over FTC’s proposal and the Do Not Track technology in particular.


A sucker for public opinion research

By Mimi Johnson, Director of NCL Health Policy

The other night, the land line rang and, though I did not recognize the name or number, I answered.  My number is on the ‘Do Not Call’ list, which has – for the most part – kept the telemarketers away.  Rather than someone trying to sell me something, I now frequently get calls with people seeking my opinion.

While many might cringe and eagerly hang up when they hear that phrase ‘do you have a few minutes …’, I get a little excited.  Of course I have a few minutes to share my opinion.  I grew up always wondering who on earth was being polled about this or that, because it certainly wasn’t me.   In the last year or two, I’ve participated in polls and surveys about politics, health reform and the health industry, the regional power company, among other things.

Last night, I was able to share my thoughts on transportation in the region.  As the public transit system prepares to make cuts to services and raise fares, and the roads grow more clogged with cars each day, I surely had a thing or two to say!

At NCL, we frequently rely on consumer surveys to gauge consumer opinions on and understanding of various issues.  With this information, we are able to advocate on your behalf.  We testify before Congress or federal agencies, and we produce educational materials to address your questions and concerns.  Recognizing the value of this information, I have definitely grown to appreciate those “pesky” calls a bit more.

So, the next time you’re settling down to relax at night and the phone rings, think twice about ignoring it or cutting the call short.  As a savvy consumer, you should take every opportunity afforded to you to share your thoughts and opinions about products and services. But if you don’t want to participate in these surveys, that’s up to you — check out this amusing piece from the Consumerist.

DNA-based disease predictors both thrilling and intimidating

By Sally Greenberg, NCL Executive Director

At a conference last week I heard the co-founder of 23andMe speak about using her company’s technology to look at our DNA to predict the risk of getting a number of diseases. Anne Wojcicki described how her husband’s DNA showed he had a gene that makes him a likely candidate for Parkinsons disease. She didn’t mention her husband by name, but he happens to be Sergey Brin, co-founder of Google.

The 23andMe kit gives consumers the chance to deposit their saliva into a vial, send it to the company, and receive a comprehensive report that can predict the likelihood of getting 12 different diseases, of having adverse responses to nine drugs, and test whether they happen to be a carrier for 21 different diseases.

I find the description of what 23andMe can do both thrilling and intimidating. Thrilling because you can look into your future. Intimidating because do you really want to?

Interestingly, a New York Times article about these gene decoding services suggests that consumers are slow to pick them up. Some of the companies – the Times listed four that are in the biz – have laid off staff and are not seeing their customer base grow in substantially. DeCodeMe, for example, has 10,000 customers and Navigenics has about 20,000, 5,000 of whom were given discounts to be in a study.

This is understandable. What if you find out you show signs you’re likely to end up with a certain disease, and your insurance company claims this was a “preexisting condition” and denies you coverage in the future? I spoke with Anne Wojcicki about that and other privacy concerns. 23andMe consulted the electronic privacy group, Electronic Frontier Foundation to review privacy issues when designing the technology, she said.

The technology is evolving, and the product makers are evolving with it. And the companies have been doing some useful work, like comparing those who suffered miserably with swine flu to those who did not, with the possibility of discovering some useful information that a drug company can use to design its vaccines. Still, using the study of genomes to gauge health care risks is really a brave new world for most consumers and one that may never catch on. Only time will tell.

Meet John Breyault

by John Breyault, NCL VP, Public Policy Telecommunications and Fraud

Hello to you all, fellow Savvy Consumer Blog readers! I’m the “new guy” here at the National Consumers League. At NCL, I’ll be coordinating the League’s policy activities and managing the National Consumers League’s Fraud Center and the Alliance Against Fraud coalition in my position as Vice President of Public Policy, Telecommunications, and Fraud.

While I’m new to the position, I have been a fan of NCL for many years through my work as Research Director of the non-profit Telecommunications Research and Action Center (TRAC). In my five years at TRAC, I educated and advocated on behalf of residential and small business consumers of communications services. As such, I became well-versed in all things related to telecom and broadband policy, where I developed an intense love-hate relationship with the minutiae of tariff sheets, ex parte filings, and – yes – even EULA’s.

Concurrent with my role at TRAC, I was also Director, Research at Amplify Public Affairs where I helped launch one of the public affairs industry’s first blogger relations practices (which should serve me well with this blog!). I also designed and implemented issue campaigns using online social networks such as MySpace and Facebook and even virtual worlds like Second Life.

I’m very excited to be joining the League at this important moment in its history. With a new Administration set to take office, the next few months will be a critical time to help shape the future of consumer-friendly policies in Washington. The old saying “you never get a second chance to make a first impression” holds true in policy work as well. Relationships with the new occupants of the White House will be forged. New Members of Congress and agency officials will need to be educated to make sure that the 111th Congress keeps the interests of consumers in mind. In short, the next few months are full of possibilities for the League and I’m proud to have this opportunity be a part of it.

Going forward, I’m looking forward to keeping up a regular posting schedule to keep everyone up to date on the League’s policy activities here in Washington. I’ll also be discussing some of the important consumer news that never seems to make it into the newspapers and evening news. Please do feel free to post comments or drop me a line directly at

Protect Your Identity from Pretexting

This month, NCL’s featuring tips in its 2008 Consumer Calendar: Have We Got Tips for You! on protecting your phone records from “pretexting,” an ID Theft technique used by criminals pretending to be you in order to gain access to your personal information.

But NCL’s Fraud Center and the Federal Trade Commission aren’t the only ones out there trying to educate consumers about avoiding ID Theft. Many consumer, finance, and technology reporters have been doing their part to spread the word as well. Here’s a recent story in the Clovis News Journal out of New Mexico, where police are advising locals against scams meant to steal consumers’ identities.

How’d You Do?

Yesterday, we shared four sample LifeSmarts question to test your ‘smarts. How’d you do?

  • Foods that bear the radura logo have been: c. Treated by irradiation
  • You are a 16-year-old employee. Which of the following are you not allowed to do under the federal child labor laws: c. Be a delivery driver
  • Which of the following calls would be prohibited when you register for the National Do Not Call list? c. Telemarketing calls
  • What kind of personal information is not covered by any federal privacy law? c. What you watch on cable television
  • Which of the following is not an advantage of using compact fluorescent light bulbs instead of incandescent light bulbs? c. They cost less

Are You LifeSmart?

The excitement is building at NCL as we finish the last-minute preparations We\'re headed to Minneapolis!for the 2008 National LifeSmarts Championship. This year we’re heading to Minneapolis, MN where teens from 29 states will compete. These state champs are sharp, emerging from more than 20,000 other students who answered more than 2.6 million questions in order to make it to Nationals.

Do you think you’re up to the challenge? Test your LifeSmarts skills.

What kind of personal information is not covered by any federal privacy law? (Answer will appear in a blog later this week.)

a. Titles of videos you rent
b. Items you buy at a supermarket
c. What you watch on cable television

Targeting and Tracking Customers Raises Privacy Concerns

By Susan Grant, Director of NCL’s Fraud Center

Most consumers don’t know that their activities online may be tracked by companies that create profiles of them based on the Web sites they visit, the pages they look at, the ads they click on, what they buy, and other information about their behavior. These profiles help businesses target their ads to those consumers who are most likely to be interested in their products or services.

So, for instance, if you’re an avid golfer and you’ve visited Web sites about golf or bought golf equipment online, you may see an ad for golfing vacations to Scotland the next time you visit a travel Web site. This isn’t necessarily sinister — you may want to see ads that are tailored to your interests. But the practice, behavioral tracking and targeting, raises concerns about privacy, security of personal information, the potential for discrimination, and use for other purposes such as law enforcement. Even though these profiles may not include consumers’ names, they may contain information that can easily be linked to specific people.

On November 1 and 2, 2007, the Federal Trade Commission held a Town Hall that brought members of the online advertising industry together with researchers, consumer representatives, privacy advocates, and others to discuss these concerns. Today, the National Consumers League submitted comments asking the FTC to take action to protect consumers and ensure trust in the online marketplace. One interesting idea, which NCL supports, is to create a national “Do Not Track List” similar to the popular “Do Not Call Registry” for consumers who don’t want to be tracked online.

Do Not Call Me. Seriously.

by Sally Greenberg, NCL Executive Director

Five years ago, I had the pleasure of putting my home phone number on the first national Do Not Call list. Dramatically seeing the number of unwanted telemarketing calls drop was a joy for my family. Back when the list was created in 2002, the plan was that consumers who added their phone numbers to the list would remain on it for five years. When the five years were up, they’d have to sign up again. (Unless, of course, they missed being interrupted at dinner time and wanted the calls to resume.)

Last week, the Federal Trade Commission, the agency responsible for the implementation of the list, announced it would not be purging the numbers after five years and require that people re-up. The U.S. House of Representatives’ Subcommittee on Commerce, Trade, and Consumer Protection of the Energy and Commerce Committee heard testimony from the FTC last week pledging to keep the list going without dropping any names. Great news for consumers! Further steps taken by Congress recently indicate our phone numbers will remain protected. House and Senate committees passed bills making it permanent. We see this as a win-win, and I was on National Public Radio’s Marketplace earlier this week to talk about it.