DNA: Patents, Permissions, Property, Ethics

There is a brouhaha in the genetic genealogy community this week and coverage in the worldwide media about patent 8,543,339 that was just awarded to 23andMe. The official title of the patent application is “Gamete donor selection based on genetic calculations,” but some are calling it a "designer-baby" application.

My initial reaction to many of the articles was to wonder how this is different than what has been happening with sperm and egg donor selection for many years. I have friends who used a long list of preferences to select a sperm donor. That seemed like a perfectly reasonable thing to do. So I had to read patent 8,543,339 to see if it included something else that I was not getting from the blog posts and news articles.

I do not have legal or medical training and my math education ended at Calculus III back in the early 1990s so reading a patent such as this is a long slog for me. My opinion and understanding is purely that of a layperson who has some understanding of and a strong interest in DNA and how it can be used. In a nutshell, it seems to me the bulk of the patent is describing a standard logical process we see whenever a person chooses a sperm or egg donor (or even a mate):

• I wish to have a child with a trait that might be a low risk of developing a specific disease or a high chance of having a specific eye color
  
• My DNA indicates a risk or likelihood of X for this condition
  
• A potential donor's DNA indicates a risk or likelihood of Y for this condition
  
• A child conceived between me and the potential donor might have a risk or likelihood of Z for this condition
  

The same calculation could be performed for multiple traits or conditions. I would then make a decision whether or not I wish to have a child whose other biological parent is this person, just as I would do now based on a donor's profile without DNA analysis (or my attraction to a mate and desire to have offspring). The complicated stuff in the patent comes in with a description of the algorithms used to analyze the DNA for the likelihood of the resulting child having the specific trait or traits. I did not see anything in the patent related to modifying the genes in the egg or sperm to achieve specific traits, just calculating the odds of the trait occurring in a child created with these biological parents.

It seems like this patent is just covering the addition of using DNA data to do something we do now with physical and personal traits, beliefs, and characteristics of a potential donor or mate. This doesn't strike me as "designing a baby" any more than we do now except we add DNA and statistical analysis to the mix. Personally, I may not agree that we should use genetic analysis to select for a baby with a particular eye color. Trying to give a baby the best chance of survival with the least chance of a debilitating disease seems harder to argue with.

While I was mulling this over, Blaine Bettinger, an intellectual property attorney with a PhD in Biochemistry, wrote a blog post titled "A New Patent For 23andMe Creates Controversy."¹ I agree with Blaine's conclusion in his article as related to the patent itself. I think everyone should read Blaine's article before coming to a conclusion about this issue.

What this issue brings to my mind is how important it is that we encourage real science education for our children and that we have an informed discussion as to how we will proceed in this brave new world we are facing with all the scientific and technical breakthroughs. I just completed a course on genetics and ethics where the instructors emphasized how much more research is needed for us to understand the impact of genetic modification of any organism—flora or fauna.²

A lot of the controversy this week for genealogists seems to be because our DNA data was used for research we didn't realize it might be used for when we gave consent for it to be used. This makes it even more important that we understand exactly what we are giving permission for when we agree to let a company use our DNA for research or when we upload our DNA data to a server where the information might be publicly shared. Every person will have to decide for herself what she wishes to agree to. But without research, progress in using DNA for any purpose will be stymied.

I have been reading American Property: A History of How, Why, and What We Own by Stuart Banner.³ This book presents, in a very readable way for the non-lawyer, a history of American laws on property and ownership. It includes a chapter on "Owning Life."⁴ All of the chapters give an insight into how American legal thinking on property of all kinds has changed over the decades. The book covers how technological changes have impacted several legal decisions related to property. Banner doesn't specifically discuss DNA in the context of today's controversy. He does discuss the legal framework and history we should understand as we determine how genetic information and other biological material could or should be used in the future.

We need to have a serious discussion about how we proceed so misunderstandings are reduced as much as possible and we can all make good decisions. These discussions should include genealogists, historians, and those from all walks of life as well as geneticists and medical practitioners. The social scientists, hard scientists, legal representatives, and educated and interested people need to cooperate to find the best way forward for humanity. But I hope everyone who wishes to be part of the process will study our history, the good and bad, and understand the implications for the future of the decisions we make today.

I don't have all the answers. As a matter of fact, I have more questions than answers about how we should proceed. But frankly, I think those of us who don't jump in wholeheartedly on one one side or the other are the ones who are needed the most as humankind determines how to ethically use what we have learned about DNA in the past and what we will learn in the future.

---

All URLs accessed 7 October 2013.

1. Blaine Bettinger, PhD, JD, "A New Patent For 23andMe Creates Controversy," 7 October 2013, The Genetic Genealogist (http://www.thegeneticgenealogist.com/2013/10/07/a-new-patent-for-23andme-creates-controversy/). See links in the first three paragraphs for blog and mass media articles. For full disclosure, I will be working with Blaine and CeCe Moore to present a week-long course on Practical Genetic Genealogy next summer at the Genealogical Research Institute of Pittsburgh (GRIP).

2. Rob DeSalle, PhD and David Randle, PhD, "Genetics and Society: A Course for Educators," Coursera online free courses (https://www.coursera.org/course/amnhgenetics).

3. Stuart Banner, American Property: A History of How, Why, and What We Own (Cambridge, Mass.: Harvard University Press, 2011). See also Robert C. Deal. "Review of Banner, Stuart, American Property: A History of How, Why, and What We Own," H-Law, H-Net Reviews , posted June 2011 (http://www.h-net.org/reviews/showrev.php?id=32895). See also Harold Henderson, "Jenny Lind, Elvis Presley, and the Evolution of Property in the US," Midwestern Microhistory: A Genealogy Blog, posted 30 July 2012 (http://midwesternmicrohistory.blogspot.com/2012/07/jenny-lind-elvis-presley-and-evolution.html).

4. With gratitude to my friend and role model Stefani Evans, CG, for prompting me to move this book to the top of my to-read pile when she pointed out this chapter and the references throughout the book to intellectual property arguments and rulings.

© 2013, Debbie Parker Wayne, CG, CGL, All Rights Reserved