CLL Support Association
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Personalised medicine has obvious benefits but has anyone thought about the issues?

Personalised medicine has obvious benefits but has anyone thought about the issues?

As we gradually understand more of the complex genetics driving the development of CLL and use that information to better determine what specific treatment regime will provide the longest remission or even a cure, we are in fact moving towards personalised medicine. CAR-T therapy is currently highly personalised medicine and will not be cost competitive until methods are researched and developed to end the reliance on modifying each patient's T-cells to specifically target B-cells, including CLL cells. There are also some regulatory problems that need to be worked through, which according to Nola Ries, Senior Lecturer, University of Newcastle and Dianne Nicol, Professor of Law, University of Tasmania, are:

• personal privacy – the genetic research and testing needed for personalised medicine reveals people’s deepest genetic secrets

• consumer protection – a growing private industry is selling genetic tests to consumers, sidestepping the traditional relationship between doctor and patient

• health care costs – worries about genetic risk factors for disease drive some people to undergo costly, and possibly unnecessary, tests and treatments.

Full article:


Photo: Flame Heath - brilliant in the scrub this time of year

3 Replies

I think about them all the time. Having a pre-existing condition in the USA has been stigma enough, without having to worry about pre-genetic dispositions. Of course I want that data. What concerns me is companies like Google & Facebook getting hold of it and selling it to their third party affiliates (loan companies, insurance companies et. al.) Has anyone bothered to read their terms of service? I am appalled that this forum has a Facebook logon option. Don't even get me started on smartphone permissions. It will be a while before US law catches up there.

If you have a couple hours to kill, you might watch these 2 videos.


Currently, pre-existing conditions in the U.S. are still a problem for life insurance, and possibly employment, though the latter has some regulations, they seem hard to prove. When you don't know what your employer knows about you, it's easy to imagine the worst.

I agree that the law lags behind the technology. It's always that way. One blog that I foillow is:

I am a member of 23andMe. I do read all their privacy notices, and I believe I understand them. People should know that if your genomic data is in a database, it also affects other members of your genetic family. They, too can be identified via your data, even if they are not members.

One must also consider that we leave our DNA everywhere we go. If someone really wants to grab a sample, they can. Law enforcement has used a much more limited form of genetic identification for decades now.

The best thing I can advise is for readers to support legislation to forbid the use of genomic data for insurance and employment risk.

Another thing I can advise is that genetic sampling or sequencing (they are different things) is not the key to understanding everything. More often than not, it raises more questions than it answers. While there are silver bullets for some diseases, there can be disappointing complexities in others. CLL and most cancers are not just a single disease. Lower your expectations.

As far as privacy goes, I would urge people to:

1. Use products that block web surfing tracking, such as Ghostery.

2. Use DuckDuckGo for your search engine.

3. As NeuroDervish said, do not use one service's login to log you into someone else's site.

4. Use a password maintenance app. I'm an IT geek, so I use KeePass, but there are others.

5. Get familiar with your broweser privacy settings, such as Do Not Track settings.

6. Don't save passwords in your browser - they can be mined by other sites.

7. Consider that the enemy may not be the government (though it can be), but is more likely to be gangs and companies that benefit financially from your data.

8. In the U.S., resist giving your Social Security Number to anyone - including medical care givers. You may not be able to avoid it if you are on Medicare or Medicaid. Caregiver computer systems are notoriously poorly managed, and they do not need your SSN, despite what they say.


Well said SeymourB! I wish I could click the Like button a few more times.

Thank you for including all this. I would add that using a non-cloud based password program (e.g. Keepass) is optimal over cloud-based (i.e. if they hack the cloud, they hack your passwords).

I work in IT and it pains me that every time I explain the points you've made (to clients or loved ones), I constantly hear the phrase, "Well, if you've done nothing wrong, you have nothing to worry about." They are amazingly naive and have no clue that the NSA is the least of their concerns.


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