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For Some African Americans, Genetic Testing Reopens Past Wounds

A legacy of unethical studies complicates calls for greater participation by African Americans. For Some African Americans, Genetic Testing Reopens Past Wounds

Late last year, Justina Crawford decided to swab the inside of her mouth for a saliva sample to do a DNA test.

Ms. Crawford, a 30-year-old working in Boston who is African American, had never done a DNA test before because she worried about who would have access to her genetic information. But her growing curiosity about her family history led her to set her reservations aside. “I want to know my roots,” she said, and purchased a kit from African Ancestry Inc., a DNA testing company.

Scientists and private genetic testing companies are making a push to enroll more African Americans in genetic research and databases. As the popularity and wider availability of genetic testing grows, so have calls from the scientific community about the need for genetic diversity in future research. In the past, genomic research was predominantly skewed to people of European ancestry. As a result, African Americans—as well as people of different demographic backgrounds—weren’t well represented in some important health research.

But before they sign up, many African Americans have to overcome concern about potential misuse of DNA results and mistrust of health research, which has not always benefited them and was sometimes conducted without their consent.

Alondra Nelson, professor of sociology at Columbia University, who has written extensively about the topic, cited a long history of “scientific racism,” such as the Tuskegee syphilis experiment conducted on African American men by the U.S. government that ran until 1972. Individuals in the study were not told they were infected with the disease or treated with penicillin. Exposure of these lapses led to changes in ethical rules.

“The mistrust never goes away,” says Professor Nelson.

In May, the National Institutes of Health launched the ambitious All of Us research program, with the goal of enrolling one million or more people of races, ethnicities and other groups that have been underrepresented in biomedical research. So far, following community outreach, 17% of the 36,539 participants in All of Us that have provided blood, urine, and other information identify as African American, which is “significantly more representation than in most studies and greater than the overall percentage of African Americans in the general population,” says Eric Dishman, director of All of Us. “The more data we gather, the more we’ll know about what makes people unique, which may, in turn, pave the way for more customized health care approaches for African Americans and many other underserved communities.”

Earlier this year, 23andMe, a direct-to-consumer personal genomics company based in Mountain View, Ca., launched a Global Genetics Project seeking to enroll people with four grandparents all born in western and central Africa and other underrepresented places. The projects can help fill in gaps in understanding about population genetics, but also can spark personal interest in health questions.

Rick Kittles, a professor at the University of Arizona College of Medicine and co-founder of African Ancestry Inc., which helps people of African descent trace their roots, said ancestry can play a role in assessing disease risk. But when he and Gina Paige co-founded the company, he says they purposely stayed away from testing for health conditions and agreed to destroy the DNA sample once the test is completed. “We share the same sensitivity the community shares,” says Dr. Kittles, who is African American. Broader health testing “is important but it has to come from the community demanding it.”

Doctors rely on population-wide studies to better assess an individual’s risk of getting a disease. Genetic testing from more diverse groups will lead to better understanding of the risks associated with particular genes, researchers say.

At a Boston event focused on DNA testing as a link to African cultural identity, Fabienne Mondesir, director of community engagement at Harvard Medical School’s Personal Genetics Education Project, gave a presentation explaining how the technology works as well as its current limits.

While the focus of the evening was ancestry and not health testing, Ms. Mondesir said it’s hard to talk about one without the other. She wanted the audience members to understand both how researchers might use information from ancestry tests to better understand health links as well as potential misuses of genetic information, including privacy concerns.

One June morning, Ms. Crawford sat in a sunny courtyard, discussing her test results with Marlon Solomon, president of the Afrimerican Culture Initiative, a Hyde Park, Mass.-based foundation that organized the Boston event.

“I think there is a benefit to DNA testing to learn health information,” says Mr. Solomon, who has a Nigerian father and African American mother. But his organization focuses on DNA testing as a way to build cultural identity. “For many people, there is stigma and trepidation about DNA tests,” he says. “But the desire for roots and identity is so strong that they are willing to take the chance.”

Ms. Crawford grew up in Pennsylvania. Her parents divorced when she was young and her mother raised her. She said she knew from her mother and grandparents that “we come from a lineage of slaves,” but not any detailed family history. She used African Ancestry Inc. test.

When she got the results, it showed a 99.7% maternal connection to the Bamileke people in Cameroon. “I didn’t even know where Cameroon is. I googled it,” says Ms. Crawford.

Ms. Crawford has since done research on Cameroon. A friend gave Ms. Crawford a book about Cameroon art. She shared the images with her mother. Mr. Solomon connected Ms. Crawford with a group in Boston that runs community projects in Cameroon. Eventually, she says, she wants to visit.

Ms. Crawford knows there is still more to learn about her DNA. But despite the positive benefits, Ms. Crawford says she does not want health information and is not yet ready to contribute her DNA for research—and may never be. Whatever comes next, she says, tears suddenly welling up in her eyes, “I want to have ownership of the experience.”

What Consumers Should Know About Commercial DNA Testing

For starters, find out what happens to the sample you submit.

Less costly genetic testing has let millions of people unlock the information in their DNA. Yet there’s a lot about these tests they don’t know—but should.

The popularity of direct-to-consumer testing continues to surge as more people order testing kits or receive them as gifts. Many are available for under $100, making genetic tests increasingly affordable for greater numbers of consumers.

Testing companies make it easy to send in a DNA sample (usually saliva) and get back genetic glimpses of where a person’s ancestors may have come from; possible health risks; or interesting connections between someone’s DNA and quirks like personal preferences for wine or the likelihood of having a unibrow (and its thickness).

Lately, however, consumer genetic testing has come under greater scrutiny. Consumers are sometimes surprised by the many ways genetic information can be used. Earlier this year, police in California disclosed they tracked down a suspect in a decades-old string of serial murders with help from the genetic information of a distant relative, which was available in a public database. Investigators have applied similar methods to solve other old criminal cases.

Businesses are also beginning to get attention for how they use people’s genetic information. Drugmaker GSK announced in July that it was investing $300 million in 23andMe and embarking on a multiyear collaboration to mine genetic information in the testing company’s database to accelerate drug development and identify candidates for clinical trials. 23andMe says it shares only aggregated information with collaborators, not any individual information, to protect privacy.

Consumers also worry that the results of testing might be used to discriminate against them when trying to get insurance. There are federal and state laws that govern different aspects of genetic testing, but not all apply to consumer companies or cover all forms of insurance.

In a recently published study, Vanderbilt University researchers James W. Hazel and Christopher Slobogin identified more than 90 direct-to-consumer genetic-testing and analysis companies in the U.S. alone, and found that their privacy policies varied widely on issues such as whether someone’s DNA sample would be destroyed after the test was run or whether an individual can later request to withdraw their genetic information from a company database.

There are efforts to help. Over the summer, the Future of Privacy Forum and several consumer testing companies, including 23andMe, Ancestry, Helix, MyHeritage and Habit, released a set of best practices they agreed to follow and say can help the burgeoning industry. Among the principles: providing consumers with an overview of key privacy protections, and education about the risks and benefits of consumer genetic testing.

Genetic counselors and privacy researchers advise people to read the companies’ policies carefully.

They Also Offer Some Questions To Consider:

How Heavily Can I Rely On Health And Disease-Risk Results I Get?

Direct-to-consumer genetic testing can provide information about potential health risks. But the results aren’t always as clear as consumers might assume. Just because someone is at higher risk for a disease doesn’t mean he or she will get it. Diet, environment, lifestyle, family history and other factors play a role. Stacey Detweiler, a genetic counselor at 23andMe, says consumers should always consult with a physician or genetic counselor before taking any action based on test results.

Some companies say they will test DNA to give advice about the best diet or most suitable romantic partner. These claims aren’t “scientific,” experts say, and may raise false expectations.

Why Are My Ancestry-Test Results Different Depending On The Company I Use?

Companies rely on proprietary databases and algorithms to make their assessments. Results may vary depending on how many people a company has in its database, as well as how diverse their backgrounds are. Some groups, including people of African and Southeast Asian descent, are often underrepresented in databases.

And companies may update their own methods for making estimates about people’s ethnicity, leading to new interpretations. In September, Ancestry announced it was using a new algorithm that would analyze longer segments of people’s DNA and offer more specific geographic results.

Political and geographic borders of countries have shifted over history, and tribes and people migrated to different places. How companies define ethnicity or national origin may differ from people’s own definitions or their oral family traditions.

“The idea that the French are a coherent population is a contemporary invention,” says Aaron Panofsky, associate professor at the UCLA Institute for Society and Genetics. “What is called French today might be different if we went back 400 years.”

Will I Be Paid If A Testing Company Sells Or Licenses My Genetic Information To Someone Else?

Overall, the answer is no. But if you consent to participate in research, some companies may compensate you for your time, through gift certificates, discounts on future purchases or small charitable donations, depending on the circumstances and their legal and ethical guidelines.

What Happens To My DNA Sample After The Test Is Run?

When people request a kit, companies will often ask whether they want to have their DNA sample stored or discarded. If the customer chooses to store the sample, it may be retained anywhere from one to 10 years. Customers can change their minds and opt to discard the sample at a later date.

Some people want the sample destroyed because they want to minimize the risk of misuse or unauthorized disclosure of data, says Dr. Hazel at Vanderbilt, or they simply have a change of heart. But others may choose to store the data, hoping to learn more from a reanalysis down the line as understanding of genes continues to improve.

If I Consent To Allowing My DNA To Be Used In Research And Later Change My Mind, Can I Withdraw My Consent And Remove My Data?

Individual company policies should be checked, but in general, the rule is: Yes, you can. Instructions on how to make a request can be found on company websites. But many companies also state that while you are free to withdraw your consent for participation in future research studies, data that have already been entered into a study won’t be pulled out.

Can Genetic Information That I Find Out Through Testing Be Used To Discriminate Against Me?

A federal law called the Genetic Information Nondiscrimination Act bars health insurers from using genetic information to determine someone’s eligibility or coverage. But the law doesn’t prevent genetic discrimination by life, disability or long-term-care insurers.

Should I Tell My Family I’m Doing The Test?

No one is under any obligation to tell anyone they are doing genetic testing or to share their results with others, even members of their own family.

Still, many people will want to tell people close to them because they, too, may be affected by the information and want to seek testing. But if you find out that you have a genetic risk factor for a disease, that will pose a dilemma. Some family members may not want to learn they are also at higher risk, particularly for a disease for which there are no effective treatments.

It can help to talk to a genetic counselor or doctor to discuss the decision. Some may offer to write a letter to the family for you explaining the test results and options that family members may want to consider.

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