Latest news with #BRCA-1
Time of India
2 days ago
- Health
- Time of India
"I need to live every darn day to the fullest": New freedom for former tennis star Chris Evert after ovarian cancer ordeal
Chris Evert (via Getty Images) Tennis great Chris Evert , a retired world No. 1 and 18-time Grand Slam singles titlist, recently shared that her battle with ovarian cancer has radically transformed her perspective on life and self-expression. Diagnosed twice with stage 1 ovarian cancer, Chris Evert is now cancer-free and is leveraging her platform to promote awareness, genetic screening, and living life on her terms. Chris Evert speaks out about her fight with cancer and how it redefined her voice and purpose Chris Evert's experience with ovarian cancer was defined by tragedy, caution, and strength. Having already lost her sister Jeanne to the disease, Chris Evert was tested genetically and determined to be a carrier of the BRCA-1 mutation. After a preventative hysterectomy in 2022, physicians found stage 1 ovarian cancer through routine pathology. Although the cancer came back, it was once more detected early on and effectively treated. Now 69, Chris Evert is in remission for the second time. "Before this period of my life, I used to be wary of image and speaking out. Now I just say what I want to say, and that is an attitude that sets you free. If I am well informed and educated on a subject and I have an opinion, then I like to use my voice to speak out," Evert recently explained. by Taboola by Taboola Sponsored Links Sponsored Links Promoted Links Promoted Links You May Like India: Jewelry On Sale For Half Price (See Price List) Luxury Jewelry | search ads Undo That's the attitude that's given her not only confidence but also a mission: empowering women to know their risk factors, to get genetic testing, and to take their health into their own hands. How an unexpected cancer diagnosis finally set Chris Evert free: "I used to be wary... Now I just Although Evert promotes early awareness, experts warn against a misconception: that there is an "early test" for ovarian cancer. As reported by the Ovarian Cancer Research Alliance (OCRA), no screen is yet effective in detecting the disease in its earliest stages among the general population. Rather, professionals highlight genetic testing and preventive surgeries, particularly for high-risk patients with BRCA mutations. Dr. Gillian Hanley, associate professor at the University of British Columbia, points to the singularity of Evert's case: 'She would never have been symptomatic,' says Hanley. 'There's no screening method that would have picked that up. The only reason that cancer was diagnosed is because her fallopian tubes were removed and then they were very, very carefully analyzed by a pathologist… and that doesn't occur outside of the case of a BRCA mutation. ' No early detection for ovarian cancer—but knowledge is power Ovarian cancer is uncommon, occurring in approximately 1 in 87 women during their lifetime, but tends to be diagnosed late because it has insidious symptoms. As opposed to popular belief, the CA-125 blood test and transvaginal scans are not effective for early detection. A UK clinical trial in 2021 on a large population showed that existing screening practices do not lower mortality. This is why medical experts now focus on prevention through genetic testing and risk-reducing surgeries like salpingectomy (removal of the fallopian tubes), especially during unrelated pelvic surgeries. 'So again, we're not saying that your regular woman on the street needs to go in and have this elective surgery,' said Sarah DeFeo of OCRA. 'But we know that hundreds of thousands of women are having surgery every year anyway, for a different reason, where they could take the opportunity to take out their tubes at the same time, potentially. It's something that they should talk to their doctor about, and it's something that doctors should be thinking about. ' DeFeo also encourages women to realize that family background counts on both sides. BRCA mutations are also inherited from fathers, so it is important to know your full genetic history. "It does change you when you have a battle like this and I do think about whether my cancer will come back from time to time, but what I think about more is that I need to live every darn day to the fullest. You know, I'd better start doing only things that I want to do and only things that make me happy. That's the way I think now," Evert said. "When you have lived through an experience like this, you appreciate that every day is precious. You just don't know what's around the corner and the reality is you have no control over it. So live every moment. This feels like a second chance for me, no doubt about it. Sometimes you have to sink to the lowest depths and get to a point where you wonder whether you will get through something like cancer to change your mindset," she said. Also read: Serving love: Top 5 Grand Slam romances that you probably didn't know about Chris Evert's survival story proves that by pushing women to venture into genetic testing and make informed choices, Evert has discovered a purpose greater than any championship medal. Game On Season 1 continues with Mirabai Chanu's inspiring story. Watch Episode 2 here.
Yahoo
01-05-2025
- Health
- Yahoo
Guthrie nurse and hospice patient share special relationship
BINGHAMTON, N.Y. (WIVT/WBGH) – Next Tuesday is National Nurses Day, and News 34 will be honoring the impact of these caregivers with a half-hour special sponsored by The Guthrie Clinic. That includes an emotional story about the relationship between a hospice patient and her nurse and their powerful message about prevention and the many ways that nurses support patients and their families. The staff on the Medical 1 floor at Guthrie Lourdes Hospital in Binghamton threw an aquarium-themed birthday party for Tara Morris's 12-year-old son Ryan last month. Registered Nurse Priscilla Scutt organized the effort. 'Just to make a damper situation more of a happy situation so he could have memories that will last him a lifetime,' Scutt said. Tara Morris has stage 3 terminal ovarian cancer. When she entered hospice care in March, she told Scutt she did not want to miss Ryan's birthday. So, they brought the party to a fully decorated family room on the hospital floor. Morris was thrilled. 'He's here. He's able to spend the time. That made me feel so good. I appreciate it, everything,' Morris said. The celebration included a slide show of happy memories for Tara and Ryan to hold onto. And there was a pinata, shark cake, goodie bags and gifts, all donated by the hospital staff. Scutt says Tara's story is very similar to that of her sister. 'Her story is very much like Tara's. During COVID, she beat ovarian stage 4. And like Tara, it came back,' Scutt said. Scutt joined Lourdes Hospital in November 2023. 'I chose nursing because of my sister and her experience with her oncology nurses and all of the support that they gave her through her fight. I figured the best way for me to help out people is to be there for her like they have been for my sister,' Scutt said. Morris was diagnosed in 2021 and Scutt has cared for her off and on since she joined Lourdes. The two have formed a very tight emotional bond. 'Priscilla has been a charm. She has been there for me,' Morris said. Tara's cancer journey began with pain in her abdomen. Turns out, she has a mutation in her BRCA-1 gene that increases the risk of developing certain cancers, particularly breast and ovarian cancer. Tara now wishes she had been tested for the mutation earlier so that she could have taken preventative measures. 'I want all the girls and women to know it's okay to go to your doctor. And ask them anything you're feeling weird,' Morris said. Both Tara's sister Christina and Priscilla also carry the mutation and have taken preventative measures. Priscilla says the nurses on her floor are like a family with a mission to instill hope and demonstrate strength to their patients. 'Through good times and bad, no matter what, we're there for them and their families because that's what we do. We're caregivers through and through,' Scutt said. Our half-hour special honoring nurses will air next Tuesday at 4 p.m. on WIVT and at 7 p.m. on WBGH. And then again on Wednesday at 5:30 on WIVT and at 5 p.m. on WBGH. Palestinian student Mohsen Mahdawi's release offers hope amid Trump crackdown Triple Cities Ski Club celebrates 60th anniversary Local AmeriCorps members impacted by federal cuts U.S. reaches deal with Mexico to share water Broome County Democrats' rally against Trump Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Forbes
08-04-2025
- Health
- Forbes
23andMe Bankruptcy Affects Marginalized People Who Didn't Share DNA
There is no rugged individualism in our DNA. Your sequenced DNA can reveal sensitive information ... More about your DNA relatives and people like you. Sequencing DNA can be empowering. But the recent 23andMe bankruptcy announcement has thrust privacy into the spotlight. Over 15 million people sent their spit to 23andMe, and the DNA they shared may have exposed people who didn't to privacy risks – relatives, perhaps, or people with similar traits or demographic characteristics. As customers with buyer's remorse rush to delete their genetic information (as I've reported here), millions more who don't have an account but whose DNA is linked to those who do have no such recourse. This is especially troubling for people from vulnerable or marginalized groups. The bankruptcy court could appoint a consumer privacy ombudsman to address these concerns, but it seems unlikely. 'I've always questioned how we use individual consent as the lawful basis/condition for the processing of sensitive personal information where there is such a highly asymmetric power dynamic,' writes Samantha Simms in a recent LinkedIn post. The digital lawyer and coach tells me she's particularly concerned about the high numbers of people with Caribbean, African American and Latin American backgrounds who flocked to take the tests 'because the lure of these services is profoundly emotional.' Once sequenced, DNA can tell you where you came from, but this blueprint of life can also tell you what lies ahead. It can act as an early warning system for disease risk and a roadmap for personalized medicine. So it's no surprise that direct-to-consumer genetic testing is so popular. Sequenced DNA is also popular with biomedical researchers and pharmaceutical companies, who can use it to link genetic markers to diseases or traits and find cures. For example, researchers have discovered that mutations in the BRCA-1 and BRCA-2 genes signal higher risk for certain cancers like breast cancer. People can now be screened for cancer risk and plan early interventions. With DTC genetic testing, they don't need to wait for a doctor to order tests. Yet bioethicists, privacy experts and national security experts warn that genetic information can also be misused in dangerous ways. We can't change our DNA if it falls into the wrong hands, unlike other identifiers like a social security number. Greshake Tzovaras, founder of the now-closed OpenSNP project, told 404 Media why he decided to shut down the genetic database he'd created to democratize genomic research. He's seen how genetic databases intended for biomedical research have largely been re-purposed for law enforcement. He cites 'a rise in far-right and other authoritarian governments' as a key driver for deleting the data, which he fears could be used to target individuals or create pseudo-scientific justifications to vilify vulnerable groups. 'Thinking about gender representation, minorities, sexual orientation—23andMe has been working on the whole 'gay gene' thing, it's conceivable that this would at some point in the future become an issue.' The U.S. Department of Justice has issued a final rule prohibiting the bulk transfer or sale of genomic data to 'countries of concern' like China. The rule extends to the sale of de-identified genomic data because it can be matched with other information to re-identify individuals or used to attack an identifiable population. The risks are significant: the same data used to offer personalized medical treatment could also be weaponized to hyper-target pathogens or bioweapons. But the rule doesn't prevent 23andMe from selling genetic data to buyers in other countries not listed as 'countries of concern.' Nor does it prevent domestic actors from misusing genetic data, as I've discussed here. Simms does a lot of ancestral research, but she can only trace her story back to 1784. Like many in her community, she longs to understand her history pre-1600s. 'Coming from a people displaced by over 300 years of genocidal chattel slavery, I cannot provide any more precise details of my African ancestry without the aid of a direct-to-consumer DNA testing company, such as 23andMe,' writes Simms on LinkedIn. 'We often carry the ache of a tree without roots. With few photographs, no clear family records, and little oral history preserved, DNA testing offers, albeit partial, answers to an individual's story. The desire to know where we come from is so fundamental that it often outweighs what is seen as the more abstract risks to privacy.' Despite this, Simms eventually decided against using a DTC genetic testing service over privacy risks and fears about how this data could be used against her community. Breaches, lack of transparency and control, and the possibility of unchecked sharing, data enrichment and profiling by data brokers were top of mind. Now, with the Trump administration's aggressive anti-DEI measures and health secretary RFK Jr. making race-based assertions regarding Black people and COVID, Simms is worried about U.S. government access to genetic data. Dr. Krystal Tsosie, an Indigenous geneticist-bioethicist and assistant professor at Arizona State University tells me that DTC genetic testing exposes Indigenous communities to unique group privacy risks. Because they tend to be small with shorter generational gaps and larger families, both individuals and tribal communities are re-identifiable. She worries about the stigmatizing effects of genomic profiling; the use of genomic data for research never agreed by those communities; and the loss of Indigenous Data Sovereignty. Historical misuse of Indigenous data by researchers has caused some tribes to issue moratoria against sharing their genetic data with researchers. In addition, concerns over community privacy have spurred tribal leaders to discourage their members from using DTC genetic testing services. Researchers sometimes fill these gaps using data from other communities as proxies, raising serious accuracy and data quality concerns. Dr. Tsosie notes that colonially displaced descendants of Native Americans hoping to re-connect with those communities feel compelled to turn to DNA testing for answers. But this reifies it as a biological construct and raises concerns around false claims to Indigeneity. 'We construct belonging and citizenship in ways that do not consider these genetic ancestry tests. So it's not just a matter of what you claim, but it's a matter of who claims you,' says Kim Tallbear in an interview with CBC. Tallbear is Dakota, a professor in the Faculty of Native Studies at the University of Alberta and author of Native American DNA; Tribal Belonging and the False Promise of Genetic Science. She emphasizes that sharing genetic material doesn't constitute lived experience in community, or shared values, beliefs and cultural practices. It's one thing to accept privacy risks for yourself. When your choices impact others, the risks are amplified. Simms wasn't ready to take a leap of faith with 23andMe, despite its privacy assertions. She feels vindicated. 'Large-scale data breaches, attempts to purchase data by the CEO post-bankruptcy, and an inability to handle deletion requests are not in line with a company that honoured its role to emotionally vulnerable consumers,' she says of 23andMe. 'There is no perfect fix for this imbalance.' Until there is, the safest approach may be not to share at all.
