Before You Spit in That Vial, Read This Book – The New York Times
Posted: March 8, 2020 at 9:53 pm
THE LOST FAMILYHow DNA Testing Is Upending Who We AreBy Libby Copeland
DNA is not love, notes a woman in The Lost Family, a new book about consumer genetic testing. Disappointed to learn that a man she thought was her half brother wasnt after all, she was underscoring that reality as revealed by DNA may not match reality as actually experienced in families.
This idea surfaces repeatedly in Libby Copelands well-researched exploration of the consequences intended and otherwise of Americans increasingly common practice of sending saliva samples to companies like 23andMe and AncestryDNA. The growing and assertively marketed industry then gives customers information about their background and allows them to find relatives by comparing their DNA with that of others in the companies databases.
For many, the results help flesh out family trees they already recognize. Others, including people adopted as children or conceived with donor sperm, can resolve longstanding questions about their birth parents. But some receive shocking surprises, like an NPE, shorthand for non-paternity event or not the parent expected revelations that ones mother or father is not who the person thought they were. The Lost Family explains the rise of the consumer genetics industry and how search angels citizen-scientist genetic genealogy experts devote hours to helping seekers solve DNA mysteries.
Copeland reiterates a few central questions throughout the book: How much of your sense of yourself should scientists and algorithms be allowed to dictate?; What makes us who we are?; and Is it always better to know the truth? Of course, the answers are up to the individual reader and will vary based on things like family dynamics and how earthshaking the consequences of knowing might be. Copelands balanced treatment of the subject allows readers to reach their own conclusions and shows them many of the factors they might consider as they do.
Theres a section on the pros and cons of companies ability to share consumer genetic information with researchers and pharmaceutical companies which could lead to better medical treatments, but also to a host of privacy issues. For instance, genetic ancestry databases to solve cold criminal cases, a practice thats taken off since it helped identify the notorious Golden State Killer.
Copeland also discusses the slipperiness of genetic ethnicity estimates, which are much less precise than the matching of individual family members. A test result might categorize someone as 37 percent Scandinavian or Irish, but as companies reference databases expand and their algorithms sharpen, such estimates could shrink or grow. The databases are also lopsided, containing more samples from people with European backgrounds than those with African or Latin American ancestry.
The book describes the controversial history, and future potential, for genetic information to be misguidedly conflated with racial and ethnic categories, even though science has documented more genetic differences within distinct population groups than between them. Attempts to twist genetic information to draw boundaries between groups have seeded societal toxicities like eugenics and white nationalism. And even people lacking nefarious motivation can blunder by linking genes and heritage too closely, Copeland writes. She cites the criticism of Elizabeth Warrens assertion that her 2018 DNA test suggesting she likely had at least one Native American ancestor six to 10 generations ago supported Warrens longstanding belief, based on her familys stories, that she was part Cherokee and Delaware Indian.
The Lost Family intersperses expository sections with an intermittent narrative of the step-by-step journey of Alice Collins Plebuch, a woman who is thrown for a loop when AncestryDNA results contradict her impression that her forebears were Irish, English and Scottish. Readers might find the unfurling of Plebuchs story a bit too attenuated, but her eventual discovery illustrates the hidden history that genetic testing can uncover.
Copeland drops in stories of other people who ferreted out family secrets. For some, like the man who learned his grandfather was African-American, not Italian, the information adds richness and context to their lives. For others, like the woman who received a letter from a lawyer asking her to stop contacting her biological father, or the woman whose half siblings wanted nothing to do with her, the denouement can be painful.
[ As Dani Shapiro recounts in her latest memoir, Inheritance, a few years ago she took a DNA test and discovered that she was only half Jewish and unrelated to the woman she had always thought was her half sister. ]
DNA testing reveals a truth that is black andwhite, even if the circumstances are gray, and then, everybody has to grapple with it, Copeland writes. Still, she says that anecdotes suggest most people are glad they unearthed the facts, even if the consequences were difficult. Hopefully, thats true because, the book contends, so many Americans are sending spit samples to DNA databanks that many genetic nuggets will inevitably be surfaced whether people want to keep them buried or not.
Visit link:
Before You Spit in That Vial, Read This Book - The New York Times
- A New Price Tag for Breast Cancer Genetic Testing - Video [Last Updated On: May 4th, 2015] [Originally Added On: May 4th, 2015]
- Genetic testing technologies - Video [Last Updated On: May 4th, 2015] [Originally Added On: May 4th, 2015]
- Prostate Cancer Genetic testing - Video [Last Updated On: May 4th, 2015] [Originally Added On: May 4th, 2015]
- Genetic Testing - Video [Last Updated On: May 4th, 2015] [Originally Added On: May 4th, 2015]
- Genetic Testing - One of the Best Things to Happen to Me - littlemamauk - Video [Last Updated On: May 4th, 2015] [Originally Added On: May 4th, 2015]
- BowelGene - genetic testing - Video [Last Updated On: May 4th, 2015] [Originally Added On: May 4th, 2015]
- Genetic Testing Fact Sheet - National Cancer Institute [Last Updated On: May 22nd, 2015] [Originally Added On: May 22nd, 2015]
- Genetic Testing - Genetics Home Reference [Last Updated On: May 22nd, 2015] [Originally Added On: May 22nd, 2015]
- FAQ About Genetic Testing - Genome.gov [Last Updated On: May 31st, 2015] [Originally Added On: May 31st, 2015]
- Regulation of Genetic Tests [Last Updated On: June 9th, 2015] [Originally Added On: June 9th, 2015]
- Types of Genetic Testing - Genetics Home Reference [Last Updated On: June 29th, 2015] [Originally Added On: June 29th, 2015]
- Genetic Testing: What You Should Know - FamilyDoctor.org [Last Updated On: July 3rd, 2015] [Originally Added On: July 3rd, 2015]
- Genetic Testing - BRCA1 & BRCA2 Mutations | Susan G. Komen [Last Updated On: July 6th, 2015] [Originally Added On: July 6th, 2015]
- What is genetic testing? - Genetics Home Reference [Last Updated On: July 6th, 2015] [Originally Added On: July 6th, 2015]
- Genomics |Genetic Testing [Last Updated On: August 24th, 2015] [Originally Added On: August 24th, 2015]
- What is genetic testing? - American Cancer Society [Last Updated On: August 24th, 2015] [Originally Added On: August 24th, 2015]
- Genetic testing - WebMD [Last Updated On: September 2nd, 2015] [Originally Added On: September 2nd, 2015]
- Genetic Testing and Screening | Florida Hospital [Last Updated On: September 2nd, 2015] [Originally Added On: September 2nd, 2015]
- Genetic Testing Toledo OH - DNA Diagnostics Center [Last Updated On: September 29th, 2015] [Originally Added On: September 29th, 2015]
- Genetics - Genetic testing and counselling - NHS Choices [Last Updated On: October 25th, 2015] [Originally Added On: October 25th, 2015]
- Genetic Testing Germantown MD - DNA Diagnostics Center [Last Updated On: February 18th, 2016] [Originally Added On: February 18th, 2016]
- GeneDx | Genetic Testing Company | The DNA Diagnostic Experts [Last Updated On: February 18th, 2016] [Originally Added On: February 18th, 2016]
- Genetic Testing - kidshealth.org [Last Updated On: February 24th, 2016] [Originally Added On: February 24th, 2016]
- BRCA1 and BRCA2: Cancer Risk and Genetic Testing [Last Updated On: February 29th, 2016] [Originally Added On: February 29th, 2016]
- Genetic Testing - Breastcancer.org - Breast Cancer ... [Last Updated On: April 4th, 2016] [Originally Added On: April 4th, 2016]
- Frequently Asked Questions About Genetic Testing - Genome.gov [Last Updated On: April 10th, 2016] [Originally Added On: April 10th, 2016]
- Pregnancy & Prenatal Testing: Genetic Testing for Inherited ... [Last Updated On: April 19th, 2016] [Originally Added On: April 19th, 2016]
- Genetic Testing | Family Caregiver Alliance [Last Updated On: April 19th, 2016] [Originally Added On: April 19th, 2016]
- Genetic Testing - American Medical Association [Last Updated On: April 19th, 2016] [Originally Added On: April 19th, 2016]
- Genetic Testing - Cancer Treatment | CTCA [Last Updated On: April 19th, 2016] [Originally Added On: April 19th, 2016]
- genome.gov - FAQ About Genetic Testing [Last Updated On: April 27th, 2016] [Originally Added On: April 27th, 2016]
- Family Cancer Genetics Program at UC San Diego Moores ... [Last Updated On: May 2nd, 2016] [Originally Added On: May 2nd, 2016]
- Genetic Testing - Benefits, costs, and risks of genetic testing [Last Updated On: May 13th, 2016] [Originally Added On: May 13th, 2016]
- Myriad Genetics | Healthcare Professionals | About Genetic ... [Last Updated On: May 13th, 2016] [Originally Added On: May 13th, 2016]
- Genetic Testing | Gluten-Free Society [Last Updated On: May 13th, 2016] [Originally Added On: May 13th, 2016]
- Genetic testing - Canadian Cancer Society [Last Updated On: May 13th, 2016] [Originally Added On: May 13th, 2016]
- Genetic Testing and Molecular Biomarkers [Last Updated On: May 13th, 2016] [Originally Added On: May 13th, 2016]
- genetic testing | Britannica.com [Last Updated On: May 13th, 2016] [Originally Added On: May 13th, 2016]
- Genetic Testing: Best Defense Against Breast Cancer? [Last Updated On: May 13th, 2016] [Originally Added On: May 13th, 2016]
- Genetic Testing | Issue List [Last Updated On: May 13th, 2016] [Originally Added On: May 13th, 2016]
- Jewish Genetics, Part 1: Jewish Populations (Ashkenazim ... [Last Updated On: June 19th, 2016] [Originally Added On: June 19th, 2016]
- What Is Genetic Testing -- Information About Genetic Testing [Last Updated On: June 23rd, 2016] [Originally Added On: June 23rd, 2016]
- Genetic Testing Report - genome.gov [Last Updated On: June 23rd, 2016] [Originally Added On: June 23rd, 2016]
- Good Laboratory Practices for Molecular Genetic Testing ... [Last Updated On: June 26th, 2016] [Originally Added On: June 26th, 2016]
- Genetics and Cancer | American Cancer Society [Last Updated On: July 18th, 2016] [Originally Added On: July 18th, 2016]
- Genetic testing - FSH Society [Last Updated On: September 22nd, 2016] [Originally Added On: September 22nd, 2016]
- Myriad Genetics | Patients & Families | Genetic Testing 101 [Last Updated On: September 22nd, 2016] [Originally Added On: September 22nd, 2016]
- BRCA1 and BRCA2: Cancer Risk and Genetic Testing Fact Sheet ... [Last Updated On: September 22nd, 2016] [Originally Added On: September 22nd, 2016]
- FAQ About Genetic Testing - National Human Genome Research ... [Last Updated On: September 22nd, 2016] [Originally Added On: September 22nd, 2016]
- Genetic testing - Wikipedia [Last Updated On: November 1st, 2016] [Originally Added On: November 1st, 2016]
- Genetic Testing for Cancer Risk | Cancer.Net [Last Updated On: November 25th, 2016] [Originally Added On: November 25th, 2016]
- Cancer Genetics Risk Assessment and Counseling (PDQ ... [Last Updated On: December 20th, 2016] [Originally Added On: December 20th, 2016]
- Patients Who Tested Positive For Genetic Mutations Fear Bias ... - NPR - NPR [Last Updated On: July 1st, 2017] [Originally Added On: July 1st, 2017]
- Genetic Testing for the Healthy - Harvard Medical School (registration) [Last Updated On: July 1st, 2017] [Originally Added On: July 1st, 2017]
- Genetic testing Overview - Mayo Clinic [Last Updated On: July 1st, 2017] [Originally Added On: July 1st, 2017]
- The real reason why all women should get their DNA tested - Quartz [Last Updated On: July 4th, 2017] [Originally Added On: July 4th, 2017]
- DNA insurance: Why genetic testing could revolutionise the industry - Verdict [Last Updated On: July 4th, 2017] [Originally Added On: July 4th, 2017]
- Everything you need to know about the Government plan for genetic testing to treat cancer patients - BreakingNews.ie [Last Updated On: July 4th, 2017] [Originally Added On: July 4th, 2017]
- Greater access to genetic testing needed for cancer diagnosis and treatment - Cancer Research UK [Last Updated On: July 5th, 2017] [Originally Added On: July 5th, 2017]
- Chief medical officer calls for gene testing revolution - BBC News - BBC News [Last Updated On: July 5th, 2017] [Originally Added On: July 5th, 2017]
- Genetic Testing Facilities and Cost - Breastcancer.org [Last Updated On: July 5th, 2017] [Originally Added On: July 5th, 2017]
- Greater access to genetic testing needed for cancer diagnosis and ... - Medical Xpress [Last Updated On: July 7th, 2017] [Originally Added On: July 7th, 2017]
- Global Breast Cancer Predictive Genetic Testing Market Outlook 2022 - PR Newswire (press release) [Last Updated On: July 7th, 2017] [Originally Added On: July 7th, 2017]
- Invitae: Growth in Genetic Testing - Moneyshow.com (registration) [Last Updated On: July 7th, 2017] [Originally Added On: July 7th, 2017]
- Cystic Fibrosis Among Asians: Why Ethnicity-Based Genetic Testing is Obsolete - PLoS Blogs (blog) [Last Updated On: July 7th, 2017] [Originally Added On: July 7th, 2017]
- Hospital gets cardiac genetic test service created in memory of broadcaster's son - Belfast Telegraph [Last Updated On: July 8th, 2017] [Originally Added On: July 8th, 2017]
- David Frost cardiac genetic testing service opens - BBC News - BBC News [Last Updated On: July 8th, 2017] [Originally Added On: July 8th, 2017]
- UK's chief medical officer calls for gene testing revolution in cancer treatment - Daily Nation [Last Updated On: July 8th, 2017] [Originally Added On: July 8th, 2017]
- Konica Minolta buys US genetic test maker in $1B deal - BioPharma Dive [Last Updated On: July 10th, 2017] [Originally Added On: July 10th, 2017]
- Checking the cost of a genetic test - Chicago Tribune - Chicago Tribune [Last Updated On: July 11th, 2017] [Originally Added On: July 11th, 2017]
- Genomic Testing in Oncology: From Single Genes to Whole Genomes - Labiotech.eu (blog) [Last Updated On: July 12th, 2017] [Originally Added On: July 12th, 2017]
- Direct-To-Consumer Genetic Testing Can Be a Trip Down the Rabbit Hole - Newswise (press release) [Last Updated On: July 12th, 2017] [Originally Added On: July 12th, 2017]
- DNA Diagnostics Center brings four genetic testing options to retail - Drug Store News [Last Updated On: July 12th, 2017] [Originally Added On: July 12th, 2017]
- Jeans for Genes Day stall at Taree City Centre - Gloucester Advocate [Last Updated On: July 31st, 2017] [Originally Added On: July 31st, 2017]
- She thought she was Irish until a DNA test opened a 100-year-old mystery - Chicago Tribune [Last Updated On: July 31st, 2017] [Originally Added On: July 31st, 2017]
- Genetic testing: The new way to identify and train elite athletes? - USA TODAY High School Sports [Last Updated On: July 31st, 2017] [Originally Added On: July 31st, 2017]
- Mail order genetic tests for health risks. How much do you want to ... - KOMO News [Last Updated On: July 31st, 2017] [Originally Added On: July 31st, 2017]
- Genetic Testing: Finding the cause of your infertility ... [Last Updated On: July 31st, 2017] [Originally Added On: July 31st, 2017]
- SF's Invitae to acquire two prenatal genetic screening firms - SFGate [Last Updated On: August 1st, 2017] [Originally Added On: August 1st, 2017]
- For Indian doctors, it's written in the genes not stars - Economic Times [Last Updated On: August 1st, 2017] [Originally Added On: August 1st, 2017]