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Pauley- I too worry about our patients and whether or not they’ll be penalized for positive genetic testing. I had a 80 year old male patient today who has breast cancer and PMH of prostate cancer and was voicing worry about the results of his genetic testing which was still pending. He stated the reason why he received genetic testing was for his grandchildren.
Hopefully, there will always be laws in place to protect our patients from discrimination.I just read an interesting article online that made me think about this discussion. Did you know that there is a very small percentage of people who can not process the drug 5FU and Xeloda? This is called DPD deficiency. (Dihydropyrimidine dehydrogenase) DPD deficiency is a condition in which the body can not break down the nucleotides thymine and uracil. Some people have developed toxic reactions and even died from receiving one dose of 5FU. The story I read was about a woman (wife and mother of 3 young children) who received her first dose of 5FU for colon cancer, and ended up in the ICU on a vent and feeding tube, with severe neurotoxicities. Her husband was her best advocate and researched what could have happened to her. He begged her oncologist to test for DPD, which they did, and she was positive for the deficiency. Long story short this was weeks after she had received the 5FU and to long out for the antidote. Her husband and her oncologist fought with the FDA for compassionate use of the antidote, which she received. Her condition improved some, but she eventually passed away. Her husband is now lobbying for DPD testing to be standard of care for anyone who is diagnosed with cancer that may receive 5FU/ Xeloda. This test is only a few hundred dollars and could save lives. This testing is being done in Europe prior to prescribing of these drugs. It seems absolutely crazy to me this is not the standard in the U.S.
ONS offers free CEU’s (they call them CNE’s) to members on their website. Here is a link to their list:
https://www.ons.org/develop-your-career/get-cne/free-cne-activitiesThey currently have several resources about genetics-
Ethical implications of genetic testing (article):
https://cjon.ons.org/cjon/21/6/ethics-and-genetics-examining-crossroads-nursing-through-case-studyGenomic testing (webinar):
https://www.ons.org/webinars/genomic-testing-cancer-care-webinarGenomics education: professional knowledge and clinical implication:
https://cjon.ons.org/cjon/21/6/genomics-education-knowledge-nurses-across-profession-and-integration-practiceUnderstanding genomics in oncology (webinar):
https://www.ons.org/webinars/its-genes-understanding-genetics-and-genomics-oncology-webinar-recordingAccess to these requires membership to ONS, which is not cheap, but I remain a member to attend conferences and to help with my certification maintenance.
Kasey- you could read up on this while on maternity leave and become an expert!
From our discussion I wanted to know what law there are regarding genetic testing and the implication of the results. Here is what I found:
Genetic Information Nondiscrimination Act (GINA)
Public Law 110-233, H.R. 493, S. 358
On May 21, 2008, President G.W. Bush signed into law the Genetic Information Nondiscrimination Act (GINA), which prohibits U.S. insurance companies and employers from discriminating on the basis of information derived from genetic tests. It forbids insurance companies from discriminating through reduced coverage or pricing and prohibits employers from making adverse employment decisions based on a person’s genetic code. In addition, insurers and employers are not allowed under the law to request or demand a genetic test.Human Genome Project Information. (2019, April 23). Human Genome Project Information Archive 1990–2003. Retrieved November 8, 2019, from https://web.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml
Specifically in the state of Ohio:
State Statute Citation: ORC §§1751.64 and 1751.65
Summary: A health insuring corporation may not (1) cancel or fail to renew the coverage because of any health status-related factor, including genetic information, (2) require an individual seeking coverage to submit to genetic screening or testing or taken into account or inquire about such testing, (3) make a decision adverse to the applicant based on entries in medical records or other reports of genetic screening or testing, or (4) cancel or refuse to issue or renew coverage for health care services based on the results of genetic screening or testing, or (6) limit benefits of an individual or group policy, contract, or agreement based on the results of genetic screening or testing. A violation of these provisions is an unfair and deceptive act or practice in the business of insurance. Further provisions apply upon the repeal of the current protections, which are in effect until February 9, 2014.Ohio Department of Health. (2019, July 31). Genetics Policy and Law. Retrieved November 8, 2019, from https://odh.ohio.gov/wps/portal/gov/odh/know-our-programs/genetic-services/Genetics-Policy-Law.
It’s good to know there are protections available but I’m sure we will all have to remain vigilant as this field continues to evolve and our patients need further protection.
Extremely interesting read!
1. Knowledge gained-I didn’t realize the challenges for community providers with regard to PM testing/results/treatments. As many have previously noted, working at The James affords us a lot of information that isn’t available at outside hospitals. It is exciting that this area is growing so rapidly so patients have better and hopefully, lower risk options for their cancer treatment.
2. Influence on practice-I definitely need to learn more about this subject. It definitely is daunting because new treatments are coming all the time. I too plan to seek out CEUs or just read, read, read so I can increase my knowledge.
3. Questions about current practice-I like that NCI is working toward a national comprehensive database with regard to these treatments/tests/results. I think this will help local providers/hospitals provide better care and patients won’t have to travel so far to get treatment. I think it is important to develop a national standard of care so patients are being treated adequately and appropriately, wherever they are. I also wonder if virtual visits will come in to play at some point in the future, allowing patients to stay locally, but still see their oncologist via video chat.
4. I agree with the conclusions of the authors. This is the future of cancer care and it is really exciting.This is good info, Greg. I do worry, as testing advances, these laws will change. It is so expensive to treat a cancer diagnosis and health insurance companies have strong presence in Washington. We definitely need to know the genetics behind these cancers, but somehow we need to protect ourselves from that info being used to exclude us or our offspring from coverage.
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