Genetic Privacy Quotes

Why should I need a prescription to spit into a vial and get my DNA read? Why can't I get my own blood drawn without a doctor's permission? It's my blood.

I didn't want my genome to be sequenced by any of the companies that were out there doing the partial sequences just from the point of view of commercialisation.

DNA sequencing opens vast ethical issues. We shall be able to know who has defective genes. What will it mean when we can be sure we're not all born equal? Worked out, the implications will scare a lot of people. Insurance companies will not want to cover those with a genetic predisposition to illness, for example. Here lurk myriad lawsuits.

One of the good things about the public Human Genome Project is that the U.S. Department of Energy and the National Institutes of Health spent a part of their budget on the ethical, legal, and social implications of their research.

As a Christian, but also as a scientist responsible for overseeing the Human Genome Project, one of my concerns has been the limits on applications of our understanding of the genome. Should there be limits? I think there should. I think the public has expressed their concern about ways this information might be misused.

We recognized in 1996 that, with progress in the field of genetics accelerating at a breathtaking pace, we need to ensure that advances in treatment and prevention of disease do not constitute a new basis for discrimination.

A cardinal principle that we must not stray from - no exceptions - is that your genetic information is your business in terms of who sees it. Nobody should be gaining access to that information without your explicit permission, and nobody should be requiring you to take a genetic test unless you decide that that's what you want to do.

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We all want our genetic information. Why would you not want genetic information?

In the biotech revolution, it is the human body, not iron or steel or plastic, that's at the source. Are the biocapitalists going to be allowed to dig without consent into our genetic codes, then market them?

Your genome isn't really secret.

A lot of genetic testing hasn't been integrated into healthcare because it has been expensive. I want to make people realise that they have the ability to be in charge of their own health.

The ability to make gametes from skin cells might have some undesirable consequences. For example, someone could take a paper coffee cup that you casually tossed in the trash and turn you into a parent without your knowledge or consent. We probably need some laws to deal with that; unconsenting parenthood seems like a bad idea.

Like the early days of the Internet, the dawn of personal genomics promises benefits and pitfalls that no one can foresee.

Not only can consumers handle their personal genetic information, but they are getting genomically oriented and anchored about such data.

I think that the idea of people wanting to steal your genome remains a little bit in the world of science fiction.

It is hard to hide our genes completely. However devoted someone may be to the privacy of his genotype, others with enough curiosity and knowledge can draw conclusions from the phenotype he presents and from the traits of his relatives.

Gene police! You! Out of the pool, now!

I think there's a lot of misunderstanding about genetic information and what you can and cannot learn. One of the things we try to do is educate individuals that knowing information is empowering.

Many health organizations discourage patients from learning their ApoE genotype. They warn that people may not be able to cope with bad news or will misinterpret the results.

Employment and health insurance are now protected by the Genetic Information Nondiscrimination Act.

It is important to democratize personal genetics and make it more accessible.

TIVO was a big shift in how people watched TV, but everyone understood the concept of TV. No one really understands the concept of, well why would I want my genetic information?

The Human Genome Project alone is the Full Employment Act for bioethicists.

I think there's a lot of misunderstanding about genetic information and what you can and cannot learn.