Showing posts with label Privacy. Show all posts
Showing posts with label Privacy. Show all posts

Thursday, February 21, 2019

Chicken Little or Pogo?



Are you a disciple of Chicken Little or of Pogo?

Most of you will recall that Chicken Little, based on very little evidence, ran to warn her neighbors that the sky was falling. 


This fable does not end well for most of her community who heeded her warning. In the 1823 Danish version (Thiele), we are told the fox, "Raev Skraev runs with them into the wood and eats them one by one." (Wikipedia)

I hope members of the genetic genealogy community are not becoming disciples of Chicken Little every time we hear the term law enforcement and genealogy DNA databases in the same sentence. The issues involved are far more complex than that -- both legally and ethically. Not all of us will arrive at the same answers on such nuanced issues but we can have a very destructive effect on our entire community by sounding off in a manner that risks throwing out our cherished baby because of some allegedly suspicious bath water.


Pogo

In the current debate about the use of genealogical databases by law enforcement, it seems to me that many genetic genealogists are our own worst enemies. We don't want to share our toys. We posit everything as an us versus them dilemma. But, is it really? Walt Kelley in his 1971 Earth Day, comic strip had Pogo famously pointing out, "Yes son, we have met the enemy and he is us." (Wikipedia

Are our own sometimes inflammatory and oft repeated comments scaring potential testers away? Those of us who have been part of this community for more than a decade will recall we have always had individuals who were reluctant to test. Some have flat out refused to test because of concerns that "they" would get my DNA on file. This concern did not emerge for the first time when DeAngelo was arrested as a suspect in the Golden State Killer cases. It will continue to exist far into the future. 

Should I test? Should I urge others to test/not test? This is NOT a question for which one universal answer best serves the needs for each and everyone of us all the time and in all situations.



Why do we test DNA?

Although there are may variations, most of us consider testing because we or someone we know has a curiosity about one of the three following questions.

1. From where did my ancestors come? Market research suggests that more half of millennials who test do so for this reason. With this knowledge advertisements on TV target the need to know one's ethnicity. For example, then one would know whether to wear a kilt or lederhosen to the next family gathering.

2. Can knowledge of the information in my genes inform me about health risks for me and/or for my descendants?

Both questions 1 and 2 can be explored without direct one-one comparison of DNA test results. The DNA of the person being tested is being compared only against an aggregate of large groups of other test takers. Results can be received without exposing the test taker to the eyes of other individual takers.

3. Would you like to connect with others who share parts of your genetic heritage? This is true genetic genealogy. True genetic genealogy is a contact sport. The entire purpose is to contact others for the purpose of filling in gaps in our family trees.


Information seeking vs Privacy?

It's more complicated than that. In the interest of full disclosure, I was dealing with these issues long before DNA testing came on the scene. Half a century ago I was a criminal investigator in the United States Air Force for 4 years during the Vietnam War. During that time I came in contact with colleagues at all levels of law enforcement -- local, state and federal. Most of them were dedicated to keeping our communities safe and respecting the rights of all -- guilty or innocent. As with any group there were a few exceptions.

Since then I have spent 35 years as an academic librarian. My ethic as a librarian was to protect the right of individuals to inquire about any topic about which they were curious and to do so in a manner that protected the privacy of the inquirer. During that time I chaired the Professional Ethics Committee of the American Library Committee.

I later created and taught a credit college course called Ethics in the Information Age. It was within the context of that course that I developed the first version the following cartoon to reflect the complex nature of this ethical dilemma of trying to find the right balance between technological possibilities and human values:


The "RIGHT thing to do" shifts as emphasis is placed on different Rights!
Initially the bottom arrow in my cartoon was focused on the need to protect children from certain information -- particularly on the Internet. After 9/11 and the Patriot Act, the focus shifted to National Security. More recently I have localized this to group or community security. 

In exploring these issues there is not a "one size fits all" ethical answer. As I blogged recently,
There is no universal answer that is “RIGHT” for all of us in all situations for all time.
In that same post I summarized the little public opinion information we have available to date. In research published in the respected journal Science, it  appears that as many as 91% of the US general public may be in favor of allowing law enforcement to use genetic genealogy databases to investigate violent crimes and locate missing persons. This positive approval rate drops considerably when there is other motivation.

Perhaps some among us are more likely to play Chicken Little than are the general public. Perhaps Pogo was right.

Perhaps the legal and ethical environment is unformed to give us the guidance we need. The post Golden State Killer cases have not yet been litigated in court and subjected to legal challenge. In a couple of cases the suspect has plead guilty and been sentenced to lengthy prison terms. This does not necessarily indicate where the preponderance of legal opinions will settle.

Ethical standards and legal standards are often in variance. We as a society need to rethink what our standards should be. First we need to consider whether or not we are even asking the appropriate questions.


David Brin on surveillance cameras:

Two decades ago science fiction author and privacy advocate David Brin suggested we tend to look at the privacy issue from the wrong perspective. Although his argument was articulated about surveillance cameras in public places, his arguments apply to our current debate about government access to DNA databases. Back then Brin warned, "The cameras are coming. They're getting smaller and nothing will stop them. The only question is: who watches whom?"

Kevin Drum continued this argument five years ago. He asserted, "Privacy Is Dead. Long Live Transparency!"
Can we save privacy?
I call this the “David Brin question,” after the science fiction writer who argued in 1996 that the issue isn’t whether surveillance will become ubiquitous—given technological advances, it will—but how we choose to live with it. Sure, he argued, we may pass laws to protect our privacy, but they’ll do little except ensure that surveillance is hidden ever more deeply and is available only to governments and powerful corporations. Instead, Brin suggests, we should all tolerate less privacy, but insist on less of it for everyone. With the exception of a small sphere within our homes, we should accept that our neighbors will know pretty much everything about us and vice versa. And we should demand that all surveillance data be public, with none restricted to governments or data brokers. Give everyone access to the NSA’s records. Give everyone access to all the video cameras that dot our cities. Give everyone access to corporate databases. (Full article here)

Chicken Little or Pogo?

I am NOT advocating that we or our surrogates, the DNA testing companies, should open genealogy database to anyone who flashes a badge. I did not open our library circulation records to homicide detectives who wanted to know what one of our college students had been reading even though she was being investigated for killing her husband. It would have been against California law to do so without a properly authorized judicial subpoena. It would also have been against my professional ethic as a librarian who believes that out clients have a right to research and read without fear of intimidation.  

I have no reason to believe that Barbara Rea-Venter and CeCe More have done anything other than a great public service in helping police identify viable suspects in some very horrific criminal cases. However, over the years I'm not sure the same could be said about every genetic genealogist who cozied up to police and appeared to seek the spotlight. 

Are we asking the right questions? Are we helping advance the cause of the genetic genealogy community? Are we the ones who are scaring away potential test takers? Are we establishing ethical guidelines that will help society find the appropriate balance between the various RIGHTS? 


Friday, January 11, 2019

is Gedmatch o.k.?



Dr. D got the following query earlier this week.

One of our Roots group members asked me today if GedMatch is an o.k. place to transfer his data.  He had gotten an email suggesting to him that he transfer, and he didn't know if it is safe.  I think mine has been transferred there, but I never get any emails from them telling me if I have matches.

I quickly responded that the simple answer was “Yes.” However, I realized that a more nuanced answer was required:
There is no universal answer that is “RIGHT” for all of us in all situations for all time.
 
Although GEDmatch has been well known to serious genetic genealogists for several years, the site exploded into the consciousness of a wide media audience following Barbara Rae-Venter‘s skillful use of this database. She was able to significantly “shrink the haystack” and help police focus on the needle who had eluded them for decades. In April, 2018, her efforts led to the arrest of Joseph James DeAngelo, Jr. He is alleged to be the “Golden State Killer” who is suspected of at least 12 murders, 45 rapes and more than 120 residential burglaries. He has yet to come to trial.



In the months that have followed, Rae-Venter has had similar successes with other cold cases and CeCe Moore has solved more than a dozen. GEDmatch has been instrumental in almost resolving all these cases that long had been considered unsolvable.



Why GEDmatch? It is not the largest of the databases of genomic information created for genealogists. Several of the DNA testing companies claim to have records of more individuals. However, it is different in several fundamental ways:

1.   Most of us who use GEDmatch were initially drawn there because we could match our DNA with known or unknown cousins who had tested at commercial labs other than the ones at which we had tested.

2.   GEDmatch is not a commercial for-profit enterprise. It does not advertise its services. Actually as its logo suggests, it might be more accurate to say GEDmatch provides tools for us to use ourselves rather than that it provides services to us.

3.   GEDmatch does not have a paid staff to provide all the services some other sites offer in terms of individualized customer service. For example it does not send notices when new matches show up. Users of the service must initiate searches to keep abreast of new matches. This makes the site useful to the genetic genealogists who take the initiative to use the myriad of tools provided.

4.   For most of its existence GEDmatch has been operated entirely by two “retired” men who are avid genealogists. Curtis Rogers and John Olson like to use their skills to help others unlock mysteries about their families.

5.   They originally charged no fees but eventually added small monthly fees for those who wanted to use advanced tools. This allowed Rogers and Olson to pay for the server time these features required.

6.   The basic level of services at GEDmatch is provided free.

7.   Although using GEDmatch does not require high level technology skills, an absolute novice may have difficulty gaining the traction needed to make the best use of features.

8.   GEDmatch does no testing on raw DNA samples. Instead it accepts testing data from commercial testing companies such as 23andMe, Ancestry, FTDNA, MyHeritage, and Living DNA.





3 reasons individuals test our DNA:

  1.  To discover information that may impact our health and/or that of our offspring.
  2.  To discover information about our ethnic origins. Market research has shown that this is the reason most millennials test. That is why television ads focus on what is probably the least settled of what our DNA can tell us. Although these first two processes may indirectly provide information about close family members, we do not need to directly compare our results with those of others to get useful information if these are our objectives.
  3. To discover information about connections with others. This is why adoptees and others of unknown parentage test. It is also the primary reason most genetic genealogists test. To be successful this activity must be a CONTACT sport. That is the objective!  

It is this latter group that GEDmatch is best suited to assist.



A tool for helping solve cold cases:


What has changed with the solutions of the cold cases? Many law enforcement officers have become aware of the power of genetic genealogy. Some of them have attended a seminar conducted by Rae-Venter on making familial matches. This is the same process through which adoptees have been searching for biological connections.



A recent article in Science reported that statistical simulations indicate more than half of Americans of European descent can probably be identified given the current 1.2 million names in this database.

Using genomic data of 1.28 million individuals tested with consumer genomics, we investigated the power of this technique. We project that about 60% of the searches for individuals of European descent will result in a third-cousin or closer match, which theoretically allows their identification using demographic identifiers.
Given the current growth rate of GEDmatch, it is projected 90% of those with European descent may be subject to identification within a couple of year.

Police have long had access to a hodgepodge of CODIS related data mostly derived from DNA testing of convicted or accused violent felons. Like our current prison populations, these databases are dis-proportionally constituted of minorities and men of lower socioeconomic groups. The current rash of cold case arrests have been successful because investigators were able to tap a very different demographic.


Community security vs. individual privacy 

Two fundamental rights are now in conflict. At the moment it appears that most members of the public are willing to tip this in favor of community security if we are talking about investigating violent crimes. In a US survey 91% were in favor of allowing police to search genealogical websites that match DNA to relatives in order to identify perpetrators of violent crimes (for example, rape, murder, arson, or kidnapping). Among respondents 12% had ordered a DNA test and 37% had researched family online. 

A parallel international survey of genealogists (41% from the US) reported by Maurice Gleeson asked, "Are you reasonably comfortable with law enforcement agencies using your DNA data on Gedmatch to help identify serial rapists and serial killers?" 85.1% responded "yes" and 8.6% said "no". When the undecided are filtered out the results of the two surveys are very similar.


Should you feel comfortable uploading your data to GEDmatch? Reasonable people can disagree. However, more than 90% seem to form a fairly solid consensus in favor.

What do you think?

 

Sunday, December 16, 2012

The DNA Dilemma


December 24, 2012 Time Cover


The current Time Magazine cover story “The DNA Dilemma: A Test That Could Change Your Life” by Bonnie Rochman raises several important questions. Each of us will have to answer them for ourselves. It is well worth reading. I have submitted the following letter to the editor for possible publication:
Bonnie Rochman (“The DNA Dilemma”, Dec 24th) is correct that “knowledge is power.” Currently, the greatest impediment to unleashing the knowledge within our genomes to improve our medical care is the ignorance or indifference of the medical community about how to harness this potential. A vast educational program is needed. Physicians see themselves as gatekeepers to this information and only value it if they have a fix that can be applied to the problems so identified.
Some patients will choose to know their predispositions and some will not. Some of us have been seeking them out with tests like 23andMe and then taking the results to our physicians. All these options should be open in the land of the free.
Information encoded within our DNA is owned by us—not by the medical establishment. It should be made accessible to those of us who want to be partners in our own health care decisions. It is not something to be doled out paternalistically when the medical profession is ready to offer us a fix for a defect. This information is valuable to us in making other life decisions. This is even more essential in guiding our decisions when current medical practice has no current fix to offer.
Patients and physicians should be partners in discussing how this information should be applied. It is not something from which the medical profession is ethically bound to protect us. By sharing the information and the responsibility for its use, all are empowered.
There are always questions about appropriate use when any new technology is introduced. The technology always develops faster than our ability to foresee or react to its impact on society. For more than a dozen years I taught "Ethics in the Information Age". Although it was focused on the ethical dilemmas library workers and web designers face on the job when dealing with clients and client information, the basic themes apply here. Reduced to the simplest possible terms there are four competing "Rights":

The right to know;
The right to privacy;
The right to own and benefit from intellectual property; and
The right to protect some or all of us in our society.

It's a zero sum game. One of those rights cannot be advanced without another retreating. It is clearly a case where one answer does not fit all people or all situations. Read the article. Discuss it with your family and physician. Comment on this blog and in other forums.

Friday, March 30, 2012

Presidential Bioethics Panel Seeks Input on Sequencing-related Issues


At the February meeting, the [Presidential Bioethics] commission decided that the central questions it wants to address are those related to how to best balance the interests of individuals and society as they relate to data privacy and access.
(GenomeWeb Daily News)
Now is the time for all good citizens to come to the aid of their genomes! Here is your chance to share you opinion BEFORE public policy has totally solidified. Access to the vast array of information within your genome is at stake.
Should you control it?
Should the government control it? 
Should the medical and research community control it? 
Should private enterprise control it?
Presidential Bioethics Panel Seeks Input on Sequencing-related Issues | GenomeWeb Daily News | Sequencing | GenomeWeb


Let your thoughts be heard at this critical juncture. Public comments are due by May 25.

Contact the Commission:
     1425 New York Avenue, NW
     Suite C-100
     Washington, DC 20005
     (202) 233-3960, phone
     (202) 233-3990, fax
     info@bioethics.gov


About the Commission
The Presidential Commission for the Study of Bioethical Issues (the Commission) is an advisory panel of the nation’s leaders in medicine, science, ethics, religion, law, and engineering. The Commission advises the President on bioethical issues arising from advances in biomedicine and related areas of science and technology. The Commission seeks to identify and promote policies and practices that ensure scientific research, health care delivery, and technological innovation are conducted in a socially and ethically responsible manner. http://bioethics.gov/cms/about