How a genetic test led this woman to get a double mastectomy – SBS
Posted: August 16, 2021 at 1:52 am
VIDEO ABOVE: Jane Tiller discusses privacy issues surrounding online DNA tests. Watch full ep. here.
Karenne uploaded the data she received from her DNA test to a third party website. Her intention was to find out whether there were any hereditary medical issues in her family.
The very first thing that popped up was two BRCA genes, she told Insight. Which scared me quite considerably.
BRCA is an abbreviation for BReast CAncer gene. BRCA1 and BRCA2 are two different genes that have been found to impact a persons chances of developing breast cancer.
The first course of action for Karenne was to book an appointment with her doctor to talk through her genetic testing discovery. She wanted to get her doctors advice and find out if there was an option for further tests. My doctor pretty much said that it's too hard to be able to test the genes.
But Karenne decided to send her DNA to another direct consumer site for genetic health testing. The results came back with a different cancer gene.
Instead of just affecting breasts, it affects colon, bowel, breast, brain, skin, thyroid, there's a lot more to be concerned about.
After seeing a genetic counsellor Karenne did a colonoscopy at the age of 47. She discovered that she had polyps that may have been on the verge of becoming cancerous.
So by the time I turned 50 I would have already been fighting colon cancer.
Jane Tiller is an ethical, legal and social adviser in public health genomics at Monash University. She said there are few things people need to consider when they do genetic testing through a third party website. Privacy is one of them, she explained, adding that consumers dont know where their data will be sent and who will have access to it.
...People were given risk information that was actually inaccurate.
I think people don't always realise when they check a box to say yes, we'd like this to go to research that it's actually going to a pharmaceutical company for profit rather than maybe to a hospital for cancer research, she told Insight.
We don't always know which companies have those relationships and which don't, certainly in the terms and conditions they should say whether they'll share the data with third parties, whether they'll see your consent for it or not. Most people we know don't read terms and conditions.
Tiller said people also need to make sure the company theyre sending their data to for testing is a reputable company and that they receive accurate information.
A few years ago there was a study where they tried to validate results from interpretation websites and about 40 per cent of results were found to be false positives. People were given risk information that was actually inaccurate.
When you are not going through a clinically accredited genetic test you dont know whether the information you are getting back is accurate or not and whether you should be making decisions based on that.
Karenne is glad she did the test. She is now 50 years old and gets regular colonoscopies. She wants to get to the forefront of any health complication that may emerge. Due to her BRACA genes, (which had mutated increasing the risk of breast cancer) Karenne also underwent a double mastectomy in early 2021.
Im fully recovered now and more relieved and one less thing to worry about.
The rest is here:
How a genetic test led this woman to get a double mastectomy - SBS
- Alzheimer's and Genetic Testing: Your Questions Answered - Healthline - March 12th, 2024
- The Evolving Treatment Landscape in EGFR Mutated NSCLC and the Role of Comprehensive Genetic Testing in ... - Cancer Network - March 4th, 2024
- PART II: The Legalities of Pre-Natal Genetic Testing - American Council on Science and Health - March 4th, 2024
- Cord Blood Registry (CBR) by CooperSurgical and Fulgent Genetics Launch Innovative Genetic Testing - PR Newswire - February 13th, 2024
- Australian life insurers support industry ban on use of genetic testing results - Proactive Investors UK - February 5th, 2024
- Predictive genetic testing helps breast cancer patient Tammy Goodsell - East Kent Hospitals University NHS Foundation Trust - February 5th, 2024
- Significance of Early Genetic Testing in HRR-Mutated mCRPC Highlighted by Real-World Observations - Targeted Oncology - January 28th, 2024
- Genetic testing saves lives but can lead to discrimination when it comes to life insurance - ABC News - January 28th, 2024
- Growth of the U.S. DTC Genetic Testing Market | Personalized Nutrition Medicine - Medriva - January 11th, 2024
- Genetic Testing - Mayo Clinic Health System - January 3rd, 2024
- However good genetic testing gets, there will always be plenty of space for you to make a total mess of things entirely of ... - CyclingWeekly - January 3rd, 2024
- Preimplantation Genetic Testing Market is Expected to Reach $1.2 Billion | MarketsandMarkets. - Yahoo Finance - December 25th, 2023
- Prenatal and Newborn Genetic Testing Market Size to Hit Eyes USD 14.72 billion by 2031 | CAGR Of 11. - PharmiWeb.com - December 16th, 2023
- Hereditary Genetic Testing Market Study on Investment Possibilities, Industry Share, and Trends through 2030 - EIN News - May 5th, 2023
- Genetic Testing: What You Should Know - Healthline - April 18th, 2023
- Genetic Testing: How It Works, Types, and Diagnosis | Patient - April 18th, 2023
- Genetic Testing Fact Sheet - NCI - National Cancer Institute - March 31st, 2023
- Tempted to have genetic testing? First ask why - Harvard Health - March 31st, 2023
- DNA Test - Genetic Testing Overview - Cleveland Clinic - February 10th, 2023
- Genetic Disorders: What Are They, Types, Symptoms & Causes - January 25th, 2023
- The Genetics of Cancer - NCI - January 25th, 2023
- Understanding Genetic Testing for Cancer Risk - December 28th, 2022
- Prenatal Genetic Diagnostic Tests | ACOG - December 28th, 2022
- DiGeorge Syndrome - StatPearls - NCBI Bookshelf - December 28th, 2022
- Global Rare Disease Genetic Testing Market Report 2022: Ongoing Conferences to Raise Awareness About Rare and Ultra-Rare Conditions to Boost Growth -... - September 21st, 2022
- Genome Medical and Pierian Announce Collaboration to Optimize Genomic Testing Programs - Business Wire - September 21st, 2022
- DNAfit Review: What It Can and Can't Tell You - Healthline - September 21st, 2022
- Purrsonalised health: The startups and VCs betting on pet genetics - Sifted - September 21st, 2022
- One of my daughters and I have the BRCA1 gene mutation - Insider - September 21st, 2022
- Lab testing transparency will improve patient care and lower costs - MedCity News - September 21st, 2022
- Artificial Intelligence Tool May Help in Early Diagnosis of... - Fragile X News Today - September 21st, 2022
- Feral swine meetings Thursday in Eureka and Libby - The Western News - September 21st, 2022
- Recap: Recent Advances in the Treatment of Metastatic Castration-Sensitive Prostate Cancer - Cancer Network - September 21st, 2022
- Australia moves to future in biotech and medical technologies with billions in new investment - The New Daily - September 21st, 2022
- Ticking away in the back of my mind: what does it mean to know the risk embedded in your DNA? - The Guardian - September 5th, 2022
- Ambry Genetics Publishes 43,000 Patient Study Showing Combined RNA and DNA Analysis Identifies Patients Who Are High-Risk for Cancer but Would Have... - September 5th, 2022
- Genetic Mosaicism Diagnosed in Case of Atypical Angelman Teen |... - Angelman Syndrome News - September 5th, 2022
- Patients and Parents Impacted by SMA May Be Optimistic About Prenatal Testing, Therapies - AJMC.com Managed Markets Network - September 5th, 2022
- Major Depression: The Chemical Imbalance Pillar Is CrumblingIs the Genetics Pillar Next? - Mad In America - Mad in America - September 5th, 2022
- MedGenome Raises $50M To Map The Human Genome - Crunchbase News - September 5th, 2022
- IVF or IUI: Which one to choose for a fertility treatment? - Health shots - September 5th, 2022
- Global Molecular Diagnostics Market is projected to grow at a CAGR of 7.28% by 2032: Visiongain Reports Ltd - Yahoo Finance - September 5th, 2022
- Overview and Prevalence of Dravet Syndrome - Contemporary Pediatrics - September 5th, 2022
- 'It takes toughness and grit' Beasley shares on her breast cancer battle, survivor's journey - Cody Enterprise - September 5th, 2022
- Warning to pregnant Norwegian women as their DNA can be accessed by Chinese authorities - ScandAsia.com - September 5th, 2022
- Global Molecular Diagnostics Devices and Equipment Market Report 2022: A $46.87 Billion Market in 2026 - Long-term Forecast to 2031 -... - September 5th, 2022
- Hereditary Prostate Cancer Genetic Testing: Motivation & Family Communication - Physician's Weekly - August 20th, 2022
- Restrictive abortion laws are limiting the options parents have after receiving genetic test results, experts say - Yahoo Philippines News - August 20th, 2022
- Conversations with a friend on IVF genetic testing - Malta Independent Online - August 20th, 2022
- How a simple home DNA test unravelled the genetic code that could help prolong my life - The National - August 20th, 2022
- 5 Health Issues That are Genetically Passed Down. Do You Have One? Eat This Not That - Eat This, Not That - August 20th, 2022
- 25 Years After 'Gattaca' Released, What Do Genetic Scientists Think About It? The Wire Science - The Wire Science - August 20th, 2022
- A lasting inheritance: City of Hope replaced my family's fear with hope - City of Hope - August 20th, 2022
- Statistics on Global Esoteric Testing Market Size & Share to Surpass USD 37917.67 Million by 2028, Exhibit a CAGR of 11.10% | Industry Trends,... - August 20th, 2022
- Population Genetic Testing: Save Lives And Money, While Avoiding Financial Toxicity - Forbes - August 11th, 2022
- Care before carrying: The significant role of Preimplantation Genetic Testing during IVF - Times of India - August 11th, 2022
- More on Professor Sarnoff's Perspective on Tillis Patent Eligibility Bill - JD Supra - August 11th, 2022
- The Silver Lining Of Innovation in Genetic Medicine - Pharmaceutical Executive - August 11th, 2022
- High susceptibility of animal-borne disease transmission to humans has pushed the animal genetics market to surpass ~ US$ 8 Billion by 2026 - BioSpace - August 11th, 2022
- Fulgent Genetics Announces Launch of PCR Based Test to Detect Monkeypox - Business Wire - August 11th, 2022
- INVITAE CORP 10-Q Management's Discussion and Analysis of Financial Condition and Results of Operations - Insurance News Net - August 11th, 2022
- U.P. man found guilty of poaching multiple 8-point deer ordered to pay $18K in restitution - MLive.com - August 11th, 2022
- Testing, Inspection, And Certification Market Worth $491.3 Billion by 2030: Grand View Research, Inc. - PR Newswire - August 11th, 2022
- BRCA Gene Mutation Can Be Passed Down From Father's Side - SurvivorNet - August 11th, 2022
- The Worldwide Genetic Testing Industry is Expected to Reach $26 Billion by 2027 - ResearchAndMarkets.com - Galveston County Daily News - July 26th, 2022
- Genetic testing may benefit patients with depression - VAntage Point - VAntage Point Blog - July 26th, 2022
- What Does it Mean to be High Risk for Breast Cancer? - Integris - July 26th, 2022
- Boy has rare genetic disease, life expectancy is five to 10 years - Insider - July 26th, 2022
- Preimplantation Genetic Testing Market Research | Industry Growing with Major Key Player Illumina, Inc (U.S.), SciGene Corporation (U.S.), Thermo... - July 26th, 2022
- Direct-To-Consumer (DTC) Genetic Testing Market Size, Scope, Growth Opportunities, Trends by Manufacturers And Forecast to 2029 This Is Ardee - This... - July 26th, 2022
- World IVF Day: 4 benefits of IVF treatment at the right age - Health shots - July 26th, 2022
- Global Metabolic Panel Testing Market to Grow with a CAGR of ~7% During 2022-2031; Market Growth to be Propelled by Increasing Prevalence of Chronic... - July 26th, 2022
- 3 Reasons to Buy This Sizzling Growth Stock - The Motley Fool - July 26th, 2022
- Monkeypox, yet another health emergency for world to cope with - China Daily - July 26th, 2022
- Rhinostics Launches the VERIstic to Redefine Small Volume Blood Collection - BioSpace - July 26th, 2022
- Direct-To-Consumer (DTC) Genetic Testing Market Size, Forecast And Trend Analysis To 2028 This Is Ardee - This Is Ardee - July 26th, 2022
- PSS: Providing quick and effective solutions - The Worldfolio - July 26th, 2022
- Prevencio Announces Agreement with Alivio Health Expanding Access to AI-Driven Cardiac HART Tests Offered by Atlas Genomics - Business Wire - July 26th, 2022
- Myriad Genetics Teams Up with Epic to Make Genetic Testing Accessible to More Patients with Electronic Health Record (EHR) Integration - GlobeNewswire - June 28th, 2022
- Global Predictive Genetic Testing And Consumer/Wellness Genomics Market Emerging Scope Of The 2022 | Illumina, BGI, Genesis Genetics, Myriad Genetics ... - June 28th, 2022