Dear Sir:
Misha Angrist's recent article astutely notes the states' misguided attempts to regulate personal genomics by treating the personal genomics product as more medical relevant than the data currently warrants. While Ms. Angrist sees these regulatory intrusions as somewhat benign, we see significant concerns: The state actions will effectively sanction those personal genomics companies that do meet the states' relatively low bar- sending a signal to consumers that it's ok to proceed impetuously; the State has your back! Similarly, Federal attempts assuage popular apprehension with genetic testing through the recently passed Genetic Information Nondiscrimination Act (GINA) will provide false security to those consumers concerned with their genomic privacy. Personal genomics raises many non-trivial privacy concerns that are as of yet unaddressed by either state or federal actions. Recreationally minded consumer oriented personal genomics companies that imprudently suggest that their customers share their genomic results often without concern for either their or their close relatives' (that share a large percentage of their genetic complement) medical privacy will expose their consumers current and potentially future genetic diseases and dispositions long before we even understand what the data means or how it can be used.
Dov Greenbaum JD MPhil PhD and Mark Gerstein, PhD
Above is an unpublished letter in response to:
http://www.technologyreview.com/biomedicine/21250
Misha Angrist's Personal Genomics: Access Denied? Technology Review (Sept/Oct 2008)
29 December 2008
let. to ed. re. "Lawyers Fight DNA Samples Gained on Sly" -- NY Times
Ms. Harmon’s recent article surveying the expansion of warrantless collections of DNA is particularly thought provoking; Whereas, a simple fingerprint merely identifies the individual, unrestrained collecting of DNA can disclose personal and private information, irrespective of the relevance to the case or the guilt of the suspect.
With rapidly evolving DNA technology, it is now possible to extract vast amounts of genomic data from the biological miscellany that is continuously shed over our daily lives. Science can discern details of a person's appearance, latent diseases, and even personality traits from this genomic data, exposing not only the suspect’s personal information but their relatives’ as well.
As law enforcement collects and archives DNA, this link to personal information will be perpetuated and privacy never completely restored.
Any legal or ethical discussion ought to be cognizant of these very real concerns, especially with regard to data security and sharing protocols.
Dov Greenbaum JD, PhD and Mark Gerstein PhD
Above is an unpublished letter in response to:
http://www.nytimes.com/2008/04/03/science/03dna.html
Amy Harmon's article: Lawyers Fight DNA Samples Gained on Sly
NY Times, April 3 2008
28 December 2008
let. to ed. re. "When in Doubt, Spit It Out" -- NY Times
Dear Sir:
Allen Salkin's recent article skillfully captures the consumer laissez-faire response to personal genomics. While personal genomics companies may bill themselves as recreational and non-medical to circumvent FDA oversight, there remain numerous unappreciated privacy concerns on par with sharing personal medical records.
Your genome describes--in exquisite detail --your propensity toward character traits and disease. And even if we can't decipher much of it now, scientific advances will eventually decode enough to substantially affect your children's privacy –with whom you share a large chunk of your genome.
Further, recent studies suggest that the genomic anonymity relied upon by many companies to share your data may be quickly eroding, further exposing the consumer and their family's genomic data. Like the erosion of online privacy, personal genomics will eventually push society to reevaluate our notions of privacy. Until then, personal genomics companies need to be especially vigilant in protecting our privacy.
Dov Greenbaum JD MPhil PhD
Mark Gerstein, PhD
Above is an unpublished letter in response to:
http://www.nytimes.com/2008/09/14/fashion/14spit.html
Allen Salkin's "When in Doubt, Spit It Out" (September 14, 2008, page ST1 of the New York edition), NY Times
let. to ed. re. "Double Helix Dept. Ptooey!" -- New Yorker
Dear Sir:
The recent article in the New Yorker about the much publicized "spit
parties" organized by personal genomics companies skillfully captures
the consumer laissez-faire response to personal genomics. While
personal genomics companies may bill themselves as recreational and
non-medical to circumvent FDA oversight, there remain numerous
unappreciated privacy concerns on par with sharing personal medical
records.
Your genome describes -- in exquisite detail -- your tendency
propensity toward character traits and disease. And even if we can't
decipher much of it now, scientific advances will eventually decode
enough to substantially affect your children's privacy -- with whom
you share a large chunk of your genome.
Further, recent studies suggest that the genomic anonymity relied upon
by many companies to share your data may be quickly eroding, further
exposing consumers and their families' genomic data. Like the erosion
of online privacy, personal genomics will eventually push our society
to reevaluate notions of privacy. Until then, personal genomics
companies need to be especially vigilant in protecting our privacy.
We wonder if all the celebrities having their "DNA scanned" would be
as relaxed about other (more conventional) invasions of their privacy
(e.g. having their photo taken on the street) as they are with their
genome, if all these implications were transparent.
Dov Greenbaum JD MPhil PhD
Mark Gerstein, PhD
Above is an unpublished letter to the editor in response to:
http://www.newyorker.com/talk/2008/09/22/080922ta_talk_schulman
Double Helix Dept.
Ptooey!
by Michael Schulman September 22, 2008
Certain innovations—cell phones, the umbrella—started out as symbols of wealth
before trickling down to the masses. Getting to know your genotype may be next
on the list. In 2006, Linda Avey and Anne Wojcicki founded a company called
23andMe (that’s chromosome pairs), which gives its customers the chance to
decode their genes....
The recent article in the New Yorker about the much publicized "spit
parties" organized by personal genomics companies skillfully captures
the consumer laissez-faire response to personal genomics. While
personal genomics companies may bill themselves as recreational and
non-medical to circumvent FDA oversight, there remain numerous
unappreciated privacy concerns on par with sharing personal medical
records.
Your genome describes -- in exquisite detail -- your tendency
propensity toward character traits and disease. And even if we can't
decipher much of it now, scientific advances will eventually decode
enough to substantially affect your children's privacy -- with whom
you share a large chunk of your genome.
Further, recent studies suggest that the genomic anonymity relied upon
by many companies to share your data may be quickly eroding, further
exposing consumers and their families' genomic data. Like the erosion
of online privacy, personal genomics will eventually push our society
to reevaluate notions of privacy. Until then, personal genomics
companies need to be especially vigilant in protecting our privacy.
We wonder if all the celebrities having their "DNA scanned" would be
as relaxed about other (more conventional) invasions of their privacy
(e.g. having their photo taken on the street) as they are with their
genome, if all these implications were transparent.
Dov Greenbaum JD MPhil PhD
Mark Gerstein, PhD
Above is an unpublished letter to the editor in response to:
http://www.newyorker.com/talk/
Double Helix Dept.
Ptooey!
by Michael Schulman September 22, 2008
Certain innovations—cell phones, the umbrella—started out as symbols of wealth
before trickling down to the masses. Getting to know your genotype may be next
on the list. In 2006, Linda Avey and Anne Wojcicki founded a company called
23andMe (that’s chromosome pairs), which gives its customers the chance to
decode their genes....
let. to ed. re. "Dawn of Low-Price Mapping Could Broaden DNA Uses" -- NY Times
Mr. Pollack's recent article discussing Complete Genomics entrance into the DNA sequencing market raises numerous concerns, particularly with the opportunity for companies to now outsource their sequencing at Complete Genomics' cut-rate prices.
Plummeting costs will further lower the barriers-to-entry into the personal genomics market, inundating this nascent industry with a myriad of consumer opportunities.
Like the erosion of online privacy, personal genomics will push society to reevaluate its notions of privacy: Your genome describes -- in exquisite detail -- your propensity toward character traits and disease. Even though we can't decipher all of it now, science will eventually decode enough to substantially affect your children's privacy -- with whom you share much of your genome.
We wonder if everyone interested in having their DNA scanned would be as relaxed about other (more conventional) invasions of their privacy as they are with their genome if the privacy implications were as transparent.
Dov Greenbaum JD MPhil PhDMark Gerstein, PhD
The above is an unpublished letter in response to:
Andrew Pollack's article: "Dawn of Low-Price Mapping Could Broaden DNA Uses"
NY Times, October 6, 2008
http://www.nytimes.com/2008/10/06/business/06gene.html
let. to ed. re. "You’re Leaving a Digital Trail. What About Privacy?" -- NY Times
John Markoff's article on the arrays of sensors digitally recording our trails was very informative. The piece's upbeat assessment of collective intelligence refreshingly focuses more on the wisdom of crowds than the tyranny of the mob. And while the piece acknowledges some personal privacy concerns along with collective intelligence's many benefits, it fails to address a very real complication: how one person's digital acquisition of their environment through these sensor arrays impacts another's privacy, particularly those who have not yet acquiesced to the emerging privacy attitudes of the MySpace generation. Although I may be content to memorialize and broadcast my surroundings, what of all the other people inadvertently caught in my digital dragnet of sensors? Are they comfortable with having this information recorded and shared? Shouldn't we be equally if not more concerned for their privacy as we seem to be for those who have actively submitted to these technologies?
Dov Greenbaum JD MPhil PhD
Mark Gerstein, PhD
The above is an unpublished letter in response to:
http://www.nytimes.com/2008/11/30/business/30privacy.html
John Markoff's "You’re Leaving a Digital Trail. What About Privacy?"
Nov. 29, 2008, NY Times
See also:
http://delicious.com/mbgmbg/clust_digitaltrail
25 December 2008
Random Info. about Yale Club in NYC
* Dress code (2000,07.23)
M-Th, F, Sa-Su
C = casual
F = formal
N = no service
roof din. rm breakfast - C, C, C
roof din. rm lunch/dinner - F, F, N
Tap rm lunch - C,C, N
Grill rm dinner - C,C,N
main lounge and bar - F,C,C
(casual in main dining rm on Fri betw mem. and labor)
* Breakfast
Business casual (no jeans, collared shirt, no tee-shirt) necessary for breakfast.
Quiet use of wi-fi is briefly available in the library but there really is no place in the club for an extensive business meeting with open laptops, so if this is necessary it probably best to walk to Starbucks
* Yale Club
http://maps.google.com/maps?f=l&hl=en&geocode=&q=yale+club&near=44th+st.+and+vanderbilt+ave.,+ny,+ny&ie=UTF8&ll=40.754064,-73.977208&spn=0.00139,0.002883&z=19&iwloc=A&om=1
http://www.yaleclubnyc.com/
* Nearby locations one could probably sit with a computer
Cucina & Co At Metlife Building
200 Park Ave, New York, NY
(212) 682-2700 - Rated 3.8 out of 5.0 - 0.1 mi NE
+ Sit down place where one could probably bring laptops
Cosi
38 E 45th St, New York, NY
(212) 883-6814
Blake & Todd
52 Vanderbilt Ave, New York, NY
(212) 883-0010
Starbucks
400 Madison Ave, New York, NY
(212) 319-1676
http://www.starbucks.com/retail/locator/PrxResults.aspx?a=1&LOC=40.7516440790587%3a-73.9759210889539&CT=40.7516440790587%3a-73.97592108895391.78126408441369%3a1.33594806331027&countryID=244&FC=RETAIL&dataSource=MapPoint.NA&Radius=5&GAD2=Lexington+Ave&GAD3=New+York%2c+NY+10017&GAD4=United+States&IC=40.7516440790587%3a-73.9759210889539%3a32%3aLexington+Ave
* Nearby Kinkos
New York NY Vanderbilt
230 Park Ave
New York, NY 10169
USA
Phone: (212) 949-2534
Fax: (212) 949-2540
+ has full service computers and printers
* Nearby Restaurants
mike jordans (gct), Metrazur (gct), cafe centro, cafe naples, grand hyatt hotel
M-Th, F, Sa-Su
C = casual
F = formal
N = no service
roof din. rm breakfast - C, C, C
roof din. rm lunch/dinner - F, F, N
Tap rm lunch - C,C, N
Grill rm dinner - C,C,N
main lounge and bar - F,C,C
(casual in main dining rm on Fri betw mem. and labor)
* Breakfast
Business casual (no jeans, collared shirt, no tee-shirt) necessary for breakfast.
Quiet use of wi-fi is briefly available in the library but there really is no place in the club for an extensive business meeting with open laptops, so if this is necessary it probably best to walk to Starbucks
* Yale Club
http://maps.google.com/maps?f=l&hl=en&geocode=&q=yale+club&near=44th+st.+and+vanderbilt+ave.,+ny,+ny&ie=UTF8&ll=40.754064,-73.977208&spn=0.00139,0.002883&z=19&iwloc=A&om=1
http://www.yaleclubnyc.com/
* Nearby locations one could probably sit with a computer
Cucina & Co At Metlife Building
200 Park Ave, New York, NY
(212) 682-2700 - Rated 3.8 out of 5.0 - 0.1 mi NE
+ Sit down place where one could probably bring laptops
Cosi
38 E 45th St, New York, NY
(212) 883-6814
Blake & Todd
52 Vanderbilt Ave, New York, NY
(212) 883-0010
Starbucks
400 Madison Ave, New York, NY
(212) 319-1676
http://www.starbucks.com/retail/locator/PrxResults.aspx?a=1&LOC=40.7516440790587%3a-73.9759210889539&CT=40.7516440790587%3a-73.97592108895391.78126408441369%3a1.33594806331027&countryID=244&FC=RETAIL&dataSource=MapPoint.NA&Radius=5&GAD2=Lexington+Ave&GAD3=New+York%2c+NY+10017&GAD4=United+States&IC=40.7516440790587%3a-73.9759210889539%3a32%3aLexington+Ave
* Nearby Kinkos
New York NY Vanderbilt
230 Park Ave
New York, NY 10169
USA
Phone: (212) 949-2534
Fax: (212) 949-2540
+ has full service computers and printers
* Nearby Restaurants
mike jordans (gct), Metrazur (gct), cafe centro, cafe naples, grand hyatt hotel