Topic: Heads up - possible roll back of genetic privacy protections

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Posted on: Mar 10, 2017 07:02PM

Posted on: Mar 10, 2017 07:02PM

hopeful82014 wrote:

This scares the living daylights out of me:

Roll Back of Genetic Protections? Mar 10, 2017

A bill is before the US House of Representatives that would enable employers to require employees to undergo genetic testing — so long as it is a part of a workplace wellness program, as GenomeWeb reports.

The Genetic Information Nondiscrimination Act of 2008 prohibits employers, as well as insurers, from requesting or demanding that someone take a genetic test. It also bars employers from making employment decisions based on a person's genes.

But this new bill, HR 1313 or the Preserving Employee Wellness Programs Act, would enable employers to get around those prohibitions. It says that workplace wellness programs wouldn't be subject to the restrictions of GINA and other protections, including the Americans with Disabilities Act of 1990. Employers would also be able to impose financial penalties on employees who do not take part in wellness programs, though they would still be considered voluntary programs.

In a statement, the American Society for Human Genetics opposes the bill. "While ASHG applauds efforts to improve employee wellness, employee protections against genetic discrimination established by GINA must not be sacrificed to achieve this," Nancy Cox, the ASHG president, says. "Americans must be able to continue to volunteer for research and benefit from genetics-based clinical advances without fear of workplace discrimination based on its findings."

Stat News adds that a House committee approved the bill this week in a party-line vote and that the bill is expected to be folded in with other healthcare legislation.

Dx IDC, HER2-
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Mar 10, 2017 07:11PM chisandy wrote:

At the very least, it needs to be amended to continue GINA’s provision to forbid discrimination by employers, insurers, creditors, etc. on the grounds of genetic test information. Ideally, though, it should die on the vine—and if it gets folded into the proposed AHCA, it will be DOA in the Senate.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy; Lumpectomy (Right) Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Mar 10, 2017 07:24PM ksusan wrote:

Gross.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right) Radiation Therapy Whole breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 10, 2017 09:22PM hopeful82014 wrote:

This was submitted by a R. from NC. All I will say is that, for a party that whines and moans almost continuously about small government and government intrusion, they are remarkably willing to interfere in the most private aspects of our lives. No one should be forced by their employer to submit to genetic testing and I can't imagine that any ethical genetic counselor could order testing on the basis of an employer's whim.

Dx IDC, HER2-
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Mar 11, 2017 12:28AM Beatmon wrote:

I was appalled when I saw the report on that possible bill. I'm retired so it won't effect me personally, but holy cannoli....how much more can people take?

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/9/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 12/1/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/1/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/27/2014 Herceptin (trastuzumab) Targeted Therapy 8/27/2014 Perjeta (pertuzumab) Chemotherapy 8/27/2014 Taxotere (docetaxel)

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