Tag: genetic discrimination

Bioethics Blogs

Risky Business: Genetic Discrimination & Insurance

Françoise Baylis discusses the response of the Canadian insurance industry to Bill S-201, An Act to prohibit and prevent genetic discrimination.

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Bill S-201, An Act to prohibit and prevent genetic discrimination, has received the unanimous support of the Canadian Senate. It is now before the House of Commons where it has received all-party support and passed second reading. It has been referred to Committee for review and improvements before the third and final reading.

In brief, there are three parts to the Act. First, there is a prohibition on “requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods and services.” This would stop companies that sell life, critical illness and disability insurance from asking clients to take a genetic test or to share information about genetic tests they may have taken.

Second, there is a proposed change to the Canada Labour Code, namely, “to protect employees from being required to undergo or to disclose the results of a genetic test.” This would stop federally related industries from asking employees to take a genetic test or to share information about a genetic test they may have taken.

Third, there is a proposed amendment to the Canadian Human Rights Act. This Act prohibits discrimination on a number of grounds including race, ethnic origin, sex, sexual orientation, and disability. The plan is to add “genetic characteristics” to this list.

Some people criticize Bill S-201 – most notably insurers. They worry about clients taking a genetic test, getting results that suggest an increased risk of developing a specific “genetic illness” and “bulking up” on insurance.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

5 Reasons Why We Need People with Disabilities in the CRISPR Debates

This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San Francisco State University.

Maybe you haven’t heard of CRISPR-Cas9. To be honest, if I hadn’t previously worked at the Center for Genetics and Society, I probably wouldn’t have heard of it either. It’s a new genetic technology that brings modification of the human germline closer in reach than ever before.

Driven by the promise of allowing parents to avoid passing on incurable genetic diseases to their offspring, the use of CRISPR to engineer human embryos presents serious risks with particularly strong implications for people with disabilities—in the present and future. It’s been getting plenty of press. And yet, as someone who tries to stay up to date constantly with what’s trending in the disability social media scene, it has seemed to me that CRISPR has been more or less absent.

Why aren’t people in the disability community talking more about this?

Why should people with disabilities have to keep spending their time justifying their existence rather than just enjoying it at present?

An event poster for Future Past in 2013 is shown, with purple clouds, and a DNA helix forms the base of a signpost with two directions: future and past.I recall a conference I organized with the Longmore Institute in 2013, “Future Past: Disability, Eugenics, and Strange New Worlds.” Disability studies scholar and activist Marsha Saxton began her panel by sharing a memory of talking with a genetics counselor while contemplating getting pregnant. The counselor exclaimed, “Gee, if I’d have known Spina Bifadas turned out as well as you, I would not have recommended selective abortion as much as I’ve done!”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Gender, genetic information and sport

Recently there has been significant debate surrounding the clash between societal norms and the interests of transgender individuals. One relevant area is that of sport –can a transgender man or woman compete in all-male or all-female teams?

De Paul University bioethicist Craig Klugman published a blog post recently exploring different approaches to the question. Klugman’s own university has a new anti-discrimination policy that includes “genetic information” among its various criteria. A policy like this, Klugman argues, “could force an institution to allow anyone to play on any team irrespective of it being a men’s or women’s team.” Someone could easily argue that a contrary policy is a form of genetic discrimination.

This approach involves identifying gender with chromosomes. Some argue this doesn’t address the proper function of sex-segregation in sport. As Klugman states, “the reason given for separating men and women in sports is supposedly fairness—in men, greater testosterone causes more muscle mass, and men tend to be taller, thus giving them an advantage in some sports.”

The International Olympic Committee used to define gender based on a person’s chromosomal identity – a female was defined as having two x chromosomes. But in 2012 the IOC scrapped their long-standing policy and replaced it with a test based on androgen levels in a competitor’s body. 

This article is published by Xavier Symons and BioEdge under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Privacy Conundrum And Genomic Research: Re-Identification And Other Concerns

No matter what the arena — finance, health care, or national security — questions surrounding the provision of personal data are always the same:  how much benefit vs. how much risk?  Who handles these data, and can those individuals be trusted?  How do organizations guard against data misuse?   What are the legal safeguards to protect privacy, and are they sufficient in an era when more data are shared more widely?

Nowhere is the privacy discussion more personal than in genomics, the very hardwiring of our existence.  Genomic data are unique to individuals (or identical twins) and, except for occasional mutations, do not change over a lifetime, thereby rendering disclosures permanent.  Genomic data also have special properties regarding privacy, especially as comprehensive whole genome sequencing becomes the major technique.

The benefits of amassing genomic data in sufficient case numbers for validity and making this knowledge available to an appropriately wide body of expert investigators are extensive. Research derived from genomic databases offers potentially large health payoffs.  Genomics can help scientists predict who will develop a disease (e.g., Huntington’s disease) and tailor treatments.  It also holds the potential to bring about a paradigm shift in how we think about and classify disease; i.e., allowing us to move from the pathology-based approach begun in the late 19th century — which focuses on the progression of disease in a specific organto a biochemical-and genomics-based approach.  This new approach is already being applied to a number of diseases, including certain cancers.

Yet the damage caused by the misuse of genomic data can be irreparable.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.