“Genetic Testing: The Story of You”
by Jeanne Erdmann
Family Circle, March 2018
NOTE: I sent this pitch to Family Circle suggesting that we package the story in a similar way to a piece on diabetes in a previous issue. Health Director Lynya Floyd liked the idea. After she and I chatted about the story over the phone, Lynya thought the story might work better packaged differently. I rewrote the pitch based on that conversation, and, trimmed it down a page. She then took the second pitch up the chain, and the story was officially assigned.
Hi Lynya, you were certainly missed at Health Journalism this year. I think the meeting turned out well. Last year, after Pitch Fest, I spoke briefly to you about a story on genetic testing, which is my specialty. A Nature Medicine story on genetic testing the dead, called “Telltale Hearts” won second place in the 2014 AHCJ Awards for Excellence. Very few freelancers are recognized in these honors. The story was reported during my AHCJ/Commonwealth Fund Fellowship, and I was the only freelancer among the five chosen for the fellowship. A story for Women’s Health called “How Old are Your Knees?” won a 2015 MORE award. I also write for The Washington Post, which just took a group of stories on hospice disparities, and for Psychology Today, which just took a story on ancestry genetic testing.
For Family Circle, I want to tell the story of home-DNA testing, what you need to know before you order a kit, and what you should consider if you’ve already received your report. Home DNA testing for health and ancestry is a hot area right now, and one which carries the potential for good but also comes with some warnings. I’ve pasted the pitch below. Thank you for reading.
The Story of You
Last week I went online and ordered a peek into my DNA. The effort took four easy clicks, a credit card, and a lot of anxiety. As a health and science writer specializing in genetic testing, I know what our DNA can tell us and what it can’t, and I know the limitations of home DNA kits. I’m also leery of having this very small portion of my DNA in any company’s database. Still, I was curious.
Plenty of others are curious, too – According to AncestryDNA, more than three million people have ordered their kits, and Ancestry represents just one of the top four companies. On the health side, the FDA recently gave 23andMe (named for the 23 chromosomes we get from each of our parents) approval for a home DNA test that provides predisposition for 10 diseases, including late-onset Alzheimer’s and Parkinson’s. Whether you are curious about genetic ancestry, or are worried about health threats hidden in the family tree, there’s a lot that you should know about home-DNA kits.
Thanks to home DNA testing, also called direct-to-consumer (DTC) testing, peeking into your DNA is easy and can cost less $100. You order the kit, spit into a tube, and mail it back. About a month later, you download your report in the privacy of your own home. As simple as this sounds there’s much to consider. Reading your test report at home means that you have no immediate support from a health care specialist, such as a genetic counselor, if you’re worried about or are surprised by what you find.
Whether you’re testing for health or ancestry, the DTC kits work the same way. We all carry the same genes, what makes us different are the slightest variations in how our DNA is arranged. These differences act like tiny gossips that signal whether we’re at risk for certain diseases, or give clues to our ancestry. The health tests are not a genetic crystal ball. They can only tell you whether your genetic risk is high or low, not whether or when you will get a disease like diabetes or Alzheimer’s. That’s because diseases are complicated, and because environment plays a big part – for instance, if we smoke, or sit too much, or eat too much sugar, or drink too much alcohol.
For example, your report might say that you are more likely to gain weight if you eat a diet high in saturated fat. Your waistline may already have let you in on that little secret but seeing this in print, and knowing you have a genetic tendency, is intended to empower you, but studies show that few actually tip their lifestyle towards healthy choices by what they find on home DNA tests.
You also need to prepare yourself for surprises. Some who use the ancestry tests are adoptees looking for biological family, and some searches have led to joyous reunions. Others have done this for entertainment but learned their father is not a biological parent. Brianne Kirkpatrick, a genetic counselor has found that even when people are blindsided by unsettling information, they eventually accept what they’ve learned. Research backs her observations – studies do show that home genetic testing does not cause undue anxiety. “I have a positive attitude for home DNA tests but every person has to decide for themselves,” Kirkpatrick says.
Home-DNA testing in a larger sense stands at the front lines of a battle over who owns our DNA and who has access. Legal battles are still raging over ownership of genetic data collected by testing companies, and whether that DNA is a trade secret. For instance, if you opt in on the home tests and allow your DNA to be used for research, you need to know that companies bundle your DNA into a database, and sell access to bioresearch and drug companies. The information greatly speeds medical research but you will not make money from participating, and you are giving up rights to your genetic material. We cannot take genetic privacy for granted. The Trump administration is proposing a law that will require genetic testing as part of company wellness programs, and allow employers to access those results.
For now, I see the story organized as your “Living with Diabetes” story in the November 2016 issue. Opening with a general description of home genetic testing, and how it works. I’ll then use the stories of women to illustrate the sections for health and ancestry. I already count top geneticists and genetic counselors among my sources, and I will contact representatives from the top four DTC companies. Cece Moore, a genetic genealogist and founder of DNA Detectives, a Facebook group of people using DNA to find biological relatives, has offered to help me contact women for the story. I’d like to package the story with several sidebars, including: The top 10 worries about home-DNA kits; Should you have your child’s DNA tested? How to find a genetic counselor; and Protecting your genetic identity.
I’ve included links to some clips Thank you for your consideration,
The Story of You
Recently, I went online and ordered a peek into my DNA. The effort took four easy clicks, a credit card, and some anxiety. As a health and science writer specializing in genetic testing, I know what our DNA can tell us and what it can’t. I’m also a private person, and I was worried about having this very small portion of my DNA in any company’s database. Still, I was curious. As it turns out, the results were fun. I have the muscle composition of an elite athlete, and one result may explain my life-long insomnia. Even though the test found no genetic flags for late-onset Alzheimer’s, my mom suffered from dementia, so I am not scot-free. That’s because the health test can only say whether anyone’s genetic risk is high or low, and our disease risk comes from a complicated mix of genes and environment. The ancestry test confirmed my Italian heritage, but I didn’t see this coming: I carry pretty much Cave-Man DNA, which unfortunately doesn’t make me Wonder-Woman strong, but may explain my allergies.
At-home DNA testing is hot right now. People want to know what they should be eating, or how they should be exercising; whether their child will be the next Venus or Serena. No DNA test can answer all of these questions, but following your curiosity costs less than it did at the start of 2017. The health and ancestry tests run less than $100 each, (although a deeper dive can bring costs near $400 dollars). In April of this year, the FDA gave 23andMe approval for an at-home health test, which allows you to get results for 10 diseases without a prescription from your doctor. You can now buy this health kit at CVS and at Target, just know that the test does not include genetic risk for any type of cancer.
The reports come to your computer, which does give you privacy, but you won’t have the immediate support of a health-care professional. The answers can bring good changes to our lives. A brand-new analysis says that nearly 25% of people pushed their lifestyle needle towards healthy living after reading their report. The same analysis explains that any pre- or post- test anxiety fades quickly, which was certainly my experience. Others, though, are surprised with information they are not prepared to hear. Health results could spur follow-up genetic testing with your doctor. If those tests confirm a high risk for a certain disease, you may face genetic discrimination and find yourself unable to buy long-term care insurance, or life insurance. We do not know what the future carries for genetic privacy.
We do know that ancestry results can bring family strife. On DNA Detectives, a 55,000-member Facebook group, people post stories about taking the ancestry test for fun, only to learn that the man who raised them isn’t their biological father. Some adoptees searching for birth families find joyful reunions, others find themselves shunned. On the positive side, this supportive group shows how social media ties can pull us through difficult times, and the testing companies have listservs, too. Genetic counselors say that people blindsided by unsettling information eventually find peace in knowing the truth.
I see this story organized as your “Next Stop: Pelvic Floor” piece from the June issue, because that structure will provide enough flexibility to explain the ins and outs of at-home DNA testing. A sidebar can list the “5 Questions You Need Answered before Jumping In,” such as whether you want to share your information, and whether you want to opt-in for research studies. c will help readers choose tests best-suited for them. I will gladly share my experience, and take additional tests if doing so advances the story. I would also like to sprinkle in the voices of other women, so we can flesh out this complicated mix of science and human emotion.
Thank you for your consideration. I look forward to your input.
Here’s a bit more about me: A Nature Medicine story on genetic testing the dead, called “Telltale Hearts” won second place in the 2014 AHCJ Awards for Excellence. Very few freelancers are recognized in these honors. The story was reported during my AHCJ/Commonwealth Fund Fellowship, and I was the only freelancer among the five chosen for the 2013 fellowship year. A story for Women’s Health called “How Old are Your Knees?” won a 2015 MORE award. I was just awarded one of the Journalists in Aging Fellowship. My project will cover disparities in access to hospice, and the stories will appear in The Washington Post. I’ve included links to some clips, and I can send others.