Tweets and Re-Tweets by @Pharma_BI and @AVIVA1950 at 2019 Petrie-Flom Center Annual Conference: Consuming Genetics: Ethical and Legal Considerations of New Technologies, Friday, May 17, 2019 from 8:00 AM to 5:00 PM EDT @Harvard_Law
Tweets by @Pharma_BI and @AVIVA1950
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Amazing Conference LIVE 2019 Petrie-Flom Center Annual Conference:
#Consuming#Genetics:#Ethical and#Legal Considerations of New Technologies, Friday, May 17, 2019 from 8:00 AM to 5:00 PM EDT#DTCgenome@PetrieFlom@AVIVA1950 https://pharmaceuticalintelligence.com/2019/01/11/2019-petrie-flom-center-annual-conference-consuming-genetics-ethical-and-legal-considerations-of-new-technologies/ … via@Pharma_BI
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Concluding remark cited by
@VarditRavitsky#DTCgenome @PetrieFlom @Pharma_BI@AVIVA1950 Great Panel on the Impact of Genetic Information new conceptual approach prioritizing parental autonomy with restriction built in
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@VarditRavitsky @PetrieFlom#DTCgenome @Pharma_BI@AVIVA1950 NIPT test for fetal sex blood type Trisonomy Whole Genome-wide analysis routinization of procedure READY at Birth impact intrafamilial discrimination babySeqProject G2P @broadinstitute
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#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Leila Jamal, NIAID Pre- Test Genetic Counseling – information and testing need, indication for testing Post-Test Informational Burden low vs high: Likely pathogenic, Pathogenic benign – natural history data potentially high impact -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Leila Jamal, NIAID benefit the patient, positive autonomy, benefiesence – how potentially impactful is the Test Information Nondirectiveness – Why? distance from eugenics + abortion politics persons and patient autonomy -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Leila Jamal, NIAID Genetic and Genomics Testing: Prenata, Pediatric, Vancer, other: Cardiology, Neurology, Hematology, Infectious diseases, pharmaco genomics, DTC, Ancestry -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Emily Qian, Genetic Counselor, Veritas Genetics – Physician-Mediated Elective Whole Genome Sequencing Tests: Impacts on Informed Consent DTC Physician-initiated Genetic Testing Physician-initiated DTC Informed consent is a process -
#DTCgenome @PetrieFlom @Pharma_BI@AVIVA1950 Recommendation based on best evidence guidelines available
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#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Natalie RamGenetic Genealogy and the Problem of Familial Forensic Identification Familial Forensic Identification – Privacy for information held by Telephone companies Involuntarily Identification by genetic data genetic markers -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Natalie Ram, Assistant Professor of Law, University of Baltimore School of Law – Genetic Genealogy and the Problem of Familial Forensic Identification Opt in to share genetic data on the platforms opt in national DB -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Natalie Ram, Univ of Baltimore School of Law Genetic relatedness is stickier than social relations Voluntary sharing of genetic information – no other party can protect genetic information of any person, thu, if shared voluntarily -
#DTCgenomic @PetrieFlom @Pharma_BI@AVIVA1950 gene APO-E e-2, e-3, e-4 If e-4 variant risk AD is 40% 23andMe since 2011 rest for e-4 unlock result # copies of e-4 are present little clinical value post diagnosis recommendation do not depend on e-4
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#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Jonathan Kahn, http://neu.edu Precision Medicine and the Resurgence of Race in Genomic Medicineprecision medicine – classification of individuals into subpopulations that differ in their susceptability to a particular disease -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Kif Augustine-Adams, BYU Law School – Generational Failures of Law and Ethics: Rape, Mormon Orthodoxy, the Revelatory Power of Ancestry DNAComplex Sorrows: Anscestry DNA – 20 Millions records. Complete anonymity and privacy collapsed -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Regulating Consumer Genetic Technologies Conclusions: DTC policies are over the place, FDA poised to regulate Big Data, Human Genomics Somatic vs Germline are key distinctions NY Dept Health 3rd Party Certification in Genomics -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Scott Schweikart, Council on Ethical and Judicial Affairs, American Medical Association and Legal Editor, AMA Journal of Ethics – Human Gene Editing: An Ethical Analysis and Arguments for Regulatory Guidance National and Global Levels -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Catherine M. Sharkey, The Emerging Role of the FDA Genetic predisposition – BRCA I & II approved Testing Pharmaco-genetic Test authorization incorrect interpretation, incorrect action based on results False positive and False negative -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Scott Schweikart, AMA Ethical concernsTechnologiesCRISPR-Cas-9 Somatic vs GermlineAMA: Individual liberty (1) Autonomy & Gene Editing (2) Non-maleficence and Beneficence (3) Social Justice Treatment vs Enhancement National Regulations -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Patricia J. Zettler, Regulators can do: Promote self regulations vs restrict community labs Drugs: premarket approval by FDA 11/2017: any use of CRISPR is subjected to regulation Bio hacking materials are distributed outside channels -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Patricia J. Zettler, FDA agency – regulation can’t reach everything, Not seen wide range abuse, FDA encourage learning and information dissemination and Educate -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Maxwell J. Mehlman, Governing Non-Traditional Biology On-Line gene editing equipment CRISPR-Cas9 – IGEM – international Competition in community of Scientists Biological weapons – issues of Prior Art impeding patentability may come up -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Maxwell J. Mehlman Harm to subjects Biosafety Safety Phase I Gene drives in Human?? – Human gene editing: “Nanoparticle and liposomal delivery” and “Allelic drive using CRISPR” -
#DTCgenome @PetrieFlom @Pharma_BI@AVIVA1950 regulatory options: liabilities, legal requirements industry restrictions on access to material community labs, NTB IRBs self-governing bodies FBI surveillance
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#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Barbara J. Evans Is it FDA duty on Cosmetic enhancement Genome is Software, US is not good in regulating software The Harm Principle, Legal Paternalism benevolent vs non-benevolent Legal Moralism – no body is harmed but it’s just wrong -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Barbara J. Evans Multiple Agencies: In the 80’s on Future Products of Biotechnology: EPA, FDA, USDA, OSHA, CPSC, NIH, NEPA, ESA, APA Skepticism that compulsory regulation for compliance with norms -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Barbara J. Evans Regulatory Challenges Citizen Science and DIY Bio democratization of science and medicine narrative, new frontiers for institutional science narrative nostalgia narrative, political narrative: “hacker” portrayals -
#DTCgenome @PetrieFlom@pharma_BI@AVIVA1950 in Preparing for Future Products of Biotechnology, NAS
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#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Seema Mohapatra, AAbolishing the Myth of “Anonymous” Gamete Donation in the Age of Direct-to-Consumer Genetic TestingAnonymous sperm donation Sell sperm $30 – $130 per sample – industry is thriving due to donor anonymity last 3 years, -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Seema Mohapatra, 2.6 million Ancestry DNA only to keep donor Anonymity Donor-Conceived Individuals at age 18 can identified the DonorLegal landscape ART – no federal laws regarding UT and WA [medical disclosure about the donor -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Nita Farahany, Professor Law, Philosophy Duke Law School need new Framework if anonymity is dead, most uses are diverted for medicinePrivacy is improving, ACA – protects from preexisting conditionsIndividual costs vs societal benefits -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Liza Vertinsky Courts: Pushing the boundaries: (1) Privacy (2) publicity rights (3) property (commodificationPresidential Figures: Infidelity gene, gambling geneLegal pathways Junk DNA Law enforcement databasesAlternative legal framing -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Kayte Spector-Bagdady, Data coming into Academia – Genetic data partnerships Academia (41% NIH funding) and Industry: Use of existing private data, company performs analysisPatients: using data and specimens in ways they do not wish -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Kayte Spector-Bagdady, to secondary research: stay anonymousPublic health covers Informed consent forms – conceptualize for secondary research protocols Transparency In BioBank Research 67% commercialization of biospecimens agree -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Property and Health Data: Excludability, Alienability and Divisibility, Valuation and compensation, Unstewarded and Orphan data, duration, tracking Propertization of medical information effect on biomedical research -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Genetic “Property” Statues:@AL@FL@GA@LA @CO@OR – genetic information pertain to the individual health data – common law Personal Property vs Information as Property object -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 direct consumer protection may get that by Claim of conversion – Common Law Genetic Testing companies are protected by three legal laws consumers as employees face genetic information been accessed by employers via Wellness Programs -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Courts shows a newfound openness to claims for genetic conversion claims will not stifle reaserch or create moral harms consumers genetics, claims for genetic conversion necessary to adequately protect people’s interests in their DNA -
#DTCgenome @PetrieFlom @Pharma_BI@AVIVA1950 three new regulations of ownership of genetic test information ownership even Dx of breast cancer Insurance may not cover BRCA testing
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#DTGgenome @PetrieFlom @Pharma_BI@AVIVA1950 employment law and genetic testing property ownership
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#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Family not in treatment relationship with the Researcher – Court rejected the claim family donated to research unfair benefir of the Hospital from the data and tissue donatedClaim of conversion – Common LawGene by Gene Family Tree DNA -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Insurance may or may not cover BRCA testing Law suit on that matter is pending -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 Life insurance company initiated genetic testing: (a) Gatekeeping policy underwriting new comer applicants (b) Wellness Employer wellness programs incentivize healthy behavior Incorporate genetic testing into wellness Programs Testing -
#DTCgenome@PetrieFlom@pharma_BI@AVIVA1950 wellness Programs Test for preventing genetic conditions Like BRCA, Lynch syndrome, preventable – win/win proposition –>>> Healthier employees. Studies show shift of cost from employer to employee and employer have access to genetic i
RE-TWEETS
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Max Mehlman thinks “DIYBio” is problematic b/c often team efforts; “biohacking” has negative connotations. Suggests “non-traditional biology.”
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@KayteSB invokes THE CONE OF SILENCE. NO MORE DATA FROM THIS TALK! Medical/scientific publishing norms are weird.#DTCGenome -
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A very full house today (480 people registered!) for the Consuming Genetics conference
@HarvardLaw@PetrieFlom.@CohenProf opening a day that promises to be fascinating. Kudos also@HankGreelyLSJU@NitaFarahany for selecting hot topics and amazing speakers.#DTCgenome#genomics
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Talking about her team’s
@Health_Affairs paper @KayteSB shows most patients want notification of commercial use of biospecimens, most are uncomfortable about profit from biospecimens, but feel better if reinvested in research.#DTCgenome @PetrieFlom
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You don’t have to identify as a biohacker to understand their goals, interests, and culture.
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Blog post about about my upcoming presentation at Petrie-Flom Center’s upcoming Consumer Genetics conference this Friday, May 17.
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I asked Maxwell Mehlman how he envisioned biohackers could form an IRB-style review process. One suggestion was to engage with insitutional IRBs. Raise your hand if you think an establishment IRB would approve
#communitybio enhancement experiments? (I don’t…)#DTCgenome -
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Gene editing has become cheaper, easier to do in community labs. Max Mehlman
@cwru compares it to where Steve Jobs and Bill Gates began with the personal computer. But US gov has listed#CRISPR as a “weapon of mass destruction”#DTCgenome @PetrieFlom
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Thanks to
@PetrieFlom for hosting another great conference!#DTCgenome
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“Diversity” means a LOT of different things–it’s very easy to slip back and forth (problematically) between molecular/genetic diversity and social constructs of race. Just using “diversity” elides and blurs important concepts. – Jonathan Kahn @
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Audience member during Q&A calls the first group of talks “very very interesting — and terrifying.” That’s what we’re here for, folks. These issues are real and we’re happy you’re here to talk about them with us.
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#DTCgenomics Just FYI my research showed you cannot waive statutory nondiscrim rights (under GINA or others) but can waive right to judicial forum to decide if there has been a violation (2009 Pyett v 14 Penn Plaza decision-ie case after GINA-overturned 30 years of precedence) -
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FYI in Perlmutter & Peerenboom, the claim was not ownership in the DNA material. It was in the genetic information contained within it
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“If I want to edit my genes and make my skin glow green, whose business is that?” Barbara Evans on paternalism issues in our views of regulating DIYbio
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Takeaways from Regulating
#DTCGenome: Hazel: existing DTC genetic privacy policies are all over the place Sharkey: in an era of big data, FDA is poised to pose enhanced role as health information regulator Schweikart: in gene editing, somatic ≠ germline editing -
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Many of the regulatory issues/possibilities raised by DIYbio will presented by
@pzettler (co-authors@jsherkow and@cjguerrini) “What can we do with what we’ve already got?”#DTCgenome -
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Moderators summary: In today’s panel we heard: -Property law won’t work -Anonymity is dead -Data is being commercialized and we don’t realize it -May be need for publicity rights for DNA. But there is hope. Good things are being done with this data.
@PetrieFlom#DTCgenome -
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Is
@Madonna right, asks Vertinsky @EmoryLaw,to be worried about “genetic#Paparazzi” publishing of information derived from your genetic information (especially discarded DNA). Or a presidential candidate@potus ? What role for law?#DTCgenome @PetrieFlom
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Interesting points by
@pzettler: Because many biohacking materials exchanges may not take place in traditional commercial contexts, attempting to regulate the trade of materials could prove difficult for FDA.#DTCgenome -
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We have not seen much FDA involvement in “genetic biohacking” says
@pzettler, but that might be a shame.Don’t need “harsh involvement” but “engagement” such as education — e.g., how long you can leave potato salad out at picnic, does not mean enforcement#dtcgenome@PetrieFlom -
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On genetic ownership and federalism.
@contreraslegals discusses the 5 states that have protected genetic property and skeptical about how well thought out the common law property approach has been.#DTCgenome @PetrieFlom @UUtah
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“When you’re doing something that’s really high risk and cutting edge, maybe you SHOULD experiment on yourself–maybe that’s the most ethical way.” Barbara Evans talks up self-experimentation (reffing previous Nobels) @
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“Whatever the boundaries of FDA’s authority are [re: biohacking]…there are important questions about how it should use that authority.”
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One person uploading info to a genetic database illuminates hundreds or thousands of other people–those people’s info isn’t “voluntarily” in datasets. Genetic databases familial searches aren’t voluntary. Natalie Ram @
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DIY gene therapy, CRISPR, etc. – failures likely to cause more harm (inadvertent) than successes. Speaker at
#DTCgenome analogizes to regulation of drones, beer, computer hacking many stakeholders with competing interests. -
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Excellent talk by
@GaryMarchant1 showing that in the face of#DTCGenome clinicians can be legally damned if they do use revealed info and also damned if they don’t–potentially liable for patient’s misguided medical decisions@PetrieFlom@CohenProf@HankGreelyLSJU@NitaFarahany
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“We need to rethink our Informed Consent methods for our secondary research protocols” – given all the confusion arising among Patients, their Doctors and the Researchers working with the data specimens about the use of the data, says
@KayteSB#DTCgenome – at Wasserstein Hall -
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How do we deal with Publicity Rights in DNA? Thought-provoking talk
#DTCgenome by Professor Vertinsky of@EmoryLaw The “Genetic Paparazzi” conundrum – at Wasserstein Hall
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@contreraslegals argues against recognizing Property Rights in personal health data: “A vast amount of ‘orphan Biomedical data’ is useless” – doesn’t help advance research in the field Other protections already available and more suitable#DTCgenome
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Leading up to Friday’s
@Harvard_Law@PetrieFlom Conference on Consuming Genetics (#DTCGenome) here’s a post about my topic: why#property law isn’t a good fit for health data.@TilburgU_TILT@SJQ_LABS@UofUHealth@sjquinney -
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Professor Kif Augustine-Adams of
@BYULawSchool says that individual privacy settings on Consumer Genetics testing have limited power; total anonymity is a myth. It is only a matter of time before the relational nature of DNA makes all connections identifiable.#DTCgenome – at Wasserstein Hall -
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“Wellness Programs” by Employers or Insurance underwriters – how should they deal with collecting genetic data?
@_anyaprince suggests Employers / Insurers only act as mediators between members and DTC genetic testing companies, and only get aggregate, anonymized data#DTCgenome – at Harvard Law School -
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Natalie Ram: there’s an idea of voluntariness re: searching & genetic information. THAT’S FICTION. Genetic relatedness is different–it’s sticky! “I could decline my aunt’s FaceBook request…but [she] can still serve as reliable-as-ever genetic informant on me.”
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A lot of thought-provoking posts this month from leading scholars in law, ethics, genetics. Get immersed in the issues before Friday’s
#DTCgenome@petrieflom conference! -
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When employer “wellness programs” incentivize employees to use
#DTCgenetictesting, consider what#data goes to#employee, what to#employer or#insurance, & what#rights does employee have about any of this.#DTCGenome@PetrieFlom#ethics
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Looking forward to joining this awesome line-up of speakers at
@Harvard_Law@PetrieFlom‘s#DTCgenome conference & talking about@cjguerrini‘s,@jsherkow‘s & my work. Thx to@CohenProf,@HankGreelyLSJU &@NitaFarahany for organizing! -
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It’s not every day that a serious conference on
#DTCgenome discusses Brad Pitt in a bath leaving behind sperm that later impregnates a woman and the legal challenges that emerge. Well done@NitaFarahany@CohenProf@profmohapatra – you managed to get everyone’s attention 🙂 -
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Anguishing story told with elegance and grace. We are all utterly unprepared for generations of secrets unearthed by 26 million ++
#DTCGeneticTesting kits sold to date.@PetrieFlom#DTCGenome#ethics -
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“Civilized societies are nearby, believe it or not!”
@VarditRavitsky explains how when#NIPT is implemented in Canada, it means the government pays for it. (We are all v jealous about your developed country to the north, Vardit)#DTCgenome -
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Jonathan Kahn
@MitchellHamline @NUSL discusses the fall and rise of race in genetic medicine, its science and politics.#dtcgenome @PetrieFlom
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Yes! And we should continue to strive to have racial and ethnic representation to ensure that genomic research and policy doesn’t continue to exacerbate racial disparities
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Fascinating discussions today at the
@PetrieFlom#DTCgenome conference -
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Potential consequences are greater when editing germline compared with somatic cells, because its modification can allow for the generational transmission of altered genes.
@scottschweikart laying out priciplist bioethical concerns of#geneediting#DTCgenome -
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Health information should not be treated as property to protect individuals, says
@contreraslegals. Instead, we should continue to enhance existing regulatory and liability rules to safeguard individual privacy and data security.#DTCgenome -
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There has been a relunctance by courts to recognize information as property, but that could change drastically when it comes to genetic data.
@contreraslegals#DTCgenome -
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Sir Wm. Blackstone is always a hit on the big screen — from my talk today on why health data isn’t property
@Harvard_Law@PetrieFlom.#DTCgenome@SJQ_LABS@UofUHealth#dataisnotproperty
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FDA involvement with DTC tests hasn’t shut them down. Five have been approved, and FDA has been flexible in its approval pathway (4 de novo, 1 510(k)). – Catherine Sharkey @
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Emily Qian of
@VeritasGenetics is a genetic counselor and is co-author on one of the blog posts in our#DTCgenome symposium: -
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At the
@petrieflom Ethics Conference on Consuming Genomics.#DTCgenome There was a question about why patients decline participating in precision medicine research. Check out our paper on why patients decline genomic sequencing https://www.genomes2people.org/wp-content/uploads/2018/07/20180301_MedSeq_GeneticCounseling_Amendola_DeclineGenomicSeq.pdf … -
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Great turnout at
@Harvard_Law@PetrieFlom DTC genomics conference today. Tour de force discussion of the issues facing the personal genomics industry and consumers today.#DTCgenome@SJQ_LABS
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“Informed consent is a process” that should include: test’s purpose, possible results of the test, test’s limitations/consequences, confidentiality/privacy, risks of testing and familial implications, and voluntary participation.
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The amazing
@VarditRavitsky closes out the conference by discussing the ethics of non-invasive prenatal testing (NIPT), it’s ethical challenges, and how whole genome NIPT may make “the fetus transparent.”#DTCgenome @PetrieFlom
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@jsherkow: what about DNA vigilantes who upload information to databases explicitly to help law enforcement? Natalie Ram: BAM I ALREADY WROTE THAT ARTICLE CHECK IT OUT. (forthcoming@VirginiaLawRev, mayyyybe here? https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3265827 …)#DTCGenome -
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23andMe does a pretty good job situating and contextualizing results, but APOE testing may have little benefit
#DTCgenome @emily_a_largent
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Is
@23andMe ‘s test for APOE associated with Alzheimer’s different ethically speaking from its other tests? @emily_a_largent @PennMedicine discuss @PetrieFlom#DTCgenome -
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Ultrasound technology made the uterus transparent, so parents could see their child before it was born. In the future,
#NIPT could make the fetus itself transparent, so parents can see the whole genome. Many associated ethical challenges, both pre- and post-birth#DTCgenome -
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Great talk by one of the authors
@_anyaprince at@PetrieFlom#DTCgenome on the need for laws and regulations to protect the privacy rights of#DTC genetic testing consumers and assuage concerns about#genetic information#discrimination#GCchat -
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Johnathan on The Fall and Rise of Race in Genomics: – not a thing (2000) – a stepping stone to true targeting (2005) – useful to classify subpopulations (2011) – under-representation of ethnically diverse subpopulations are necessary for good data (2019)
#DTCGenome -
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When
#DTCGenome tests allow the breach of anonymity and privacy of relatives who don’t want to be known–including in cases of rape–what should we do? Answers aren’t easy. -Kif Augustine-Adams -
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Listening to the brilliant
@jamalenator discuss the concept of non-directiveness in genetic counseling.#DTCGenome@PetrieFlom
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Grateful for the opportunity to participate in the
@PetrieFlom Annual Conference – thanks@CohenProf@NitaFarahany@HankGreelyLSJU@lexikon1 Carmel Sachar & Cristine Hutchison-Jones for a great line-up & planning- learned a lot & left with many more ?s to consider#dtcgenome
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#Regulations#GeneEditing &#PublicTrust: “The more jurisdictions that adopt a cautionary approach to their own regulations for genome editing (particularly heritable genome editing) the more likely negative world-wide consequences can be mitigated.”@PetrieFlom#Crispr -
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There’s no prospect of potentially suing
@23andme because of the disclaimers and forced arbitration put into agreements by the company @GaryMarchant1
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#DTCgenome@_anyaprince explains the ways employer wellness programs is only a “theoretical win-win.” Minimal results come at the cost at privacy, and all of which can also show up in insurace realms as well. (Ex: Life insurers also implementing wellness policies) -
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Although increasing access to predictive/actionable genetic tests could theoretically be beneficial, we should be cautious about using third-parties, like life insurers, to disseminate these tests to their consumers without greater regulatory protections.
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@jrobertsuhlc has examined for years whether we should own our genetic info. Three reactions: Lay: yeah, duh Lawyers: no, duh (see Moore v Regents of U of Cal) Clinicians/researchers: Good God No! Disaster! (Not live-tweeting b/c draft here: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3357566 …)#DTCGenome -
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Property Conversion in Genetic Property Rights – who owns the rights? “Researchers need to be transparent and use adequate informed consent” – claims for generic conversion should not stifle research or create moral harms, suggests
@jrobertsuhlc#DTCgenome – at Wasserstein Hall -
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We’re so proud of our friend and Academic Fellowship alum
@WNicholsonPrice!
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Why is most insurance typically a state issue? FYI – Congress essentially “blessed” and preserved a state regulatory system of the insurance industry with passage of the McCarran-Ferguson Act of 1945. It makes it politically difficult to push this at federal level
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DTC genetic testing customers lack legal protections. Genetic conversations might offer them some rights… ?
@jrobertsuhlc#DTCgenome -
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@_anyaprince takeaway: Wellness programs aren’t necessarily bad, but question is what data goes to consumers, what data to employers and insurers, and what can they do with it?#DTCGenome -
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@GaryMarchant1 takeaway: w/r/t liability,#DTCGenome companies are essentially immune because of disclaimers & arbitration clauses; doctors may be on the hook. -
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Q by
@laurahercher: What do we tell GCs/trainees when we get a DTC result that needs to be confirmed but insurance won’t pay for confirmation? Answer: not very clear, but might be liable if we do nothing. Yikes!#DTCgenome#GCChat -
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Major disconnect with the ideas of ways to convert health data into what we have traditionally considered property-like rights.
#dtcgenome @contreraslegals -
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Great point from
@contreraslegals about how to treat “control group” genetic data, from those without the indicative genetic information, in arguments for genetic ownership/remuneration arguments.#dtcgenome@PetrieFlom -
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The story of a mom who contacts her (donor conceived) five-year-old’s grandmother — then gets threatened by a sperm bank
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The ethical debate about anonymity is MOOT. There is no anonymity for sperm donors, nor are there any federal laws regarding anonymity of sperm donors. (Some states address medical information/disclosure but not anonymity)
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Three observations: 1. Biomedical data/samples are governed by method of procurement 2. Contributors care about use 3. Specimens/data procured differently end up being used similarly (lots of mixing between academia & industry). ==>TENSION. –
@KayteSB @#DTCGenome -
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Rights to privacy or publicity – What will the courts decide? Well, it’s unclear because there are gaps in the existing laws. Liza Vertinsky also looking at the underlying implications of the choices of legal pathways
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@NitaFarahany is an active moderator! Asking excellent questions (including mine–how do we react to patients not ‘getting’ consent info?, and then@CohenProf‘s on right not to be a genetic parent! Need to think on your feet w/ Nita around!)#DTCgenome -
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Learning a lot today
@PetrieFlom#DTCgenome but among the most fascinating: https://geneticliteracyproject.org/2016/02/19/madonna-may-suffer-dna-paranoia/ …#whoknew? -
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Wondering how panelists and fellow
@PetrieFlom#DTCgenome attendees feel about this lack of anonymity?#Adoptees and individuals conceived from egg or#spermdonation who want to know about their#genetic background never consented to anonymity of donors@GCBrianne@MyGeneCounsel -
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Yeah that looks simple! Barbara Evans
@UHouston on what the regulatory pathway issupposed to look like and what makes it challenging in the world of genetics using charts from@theNASEM 2017 reports. And an ode to the “pink golden retriever” we all want#DTCgenome@PetrieFlom
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You’re welcome!
Swag at#DTCgenome : branded umbrellas. In Cambridge, where it’s been raining for a month. Brilliant – thank you!
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Barbara Evans: Peer-review is no longer the threshold for good science it once was – grant review is. But if research is not funded…those protections aren’t there
#DIYBio#DTCgenome -
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How well are
#DTCgenome companies doing in complying with the privacy principles they themselves signed on to? James Hazel talks about the work he and Chris Slobogin @VanderbiltU @vanderbiltlaw have done. @PetrieFlom
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Excellent talk by Barbara Evans expressing skepticism about a top down regulatory approach on biohacking (“If I want to turn my skin bright green who’s the FDA to tell me I can’t?), citing Lisa Ikemoto’s excellent DIY Bio Hacking article
#DTCgenome@PetrieFlom -
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Terrific representation of women at
#DTCGenome! Speakers: 14F, 6M Moderators: 4F, 2M Nicely done,@PetrieFlom folks. -
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Panel takeaways: * DTC privacy policies are all over the place, and Best practices are a good way forward. * FDA is poised to take an advanced role as a regulator in the field. * We must differentiate between germline and somatic editing for regulation
#dtcgenome -
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Catherine Sharkey asks us to consider the FDA may play in managing the conceptual risk and regulatory model for DTC genetic testing especially given the complexities that AI, machine learning, and big data add to this industry
#DTCgenome@PetrieFlom -
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You can hear a pin drop in the auditorium as Kif Augustine
@BYULawSchool tells a very personal tale about how#dtcgenome reveals a story of rape and a lost half sister. Secrets, lies, ancestry, DNA, and Mormon Orthodoxy in 1959 Utah.@PetrieFlom -
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And what does diversity mean? What does it do? Among other things, drives $$$$ funding in the research cycle.
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Health equity is due to structural and systemic racism in the field present from its beginnings. Seeking more diversity in the workforce will not solve this “health equity” issue. As Jonathan Khan notes, these d&i initiatives can be used to elide responsibility
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Natalie Ram at
#DTCGenome talks about familial investigations for law enforcement. For a short, recent@sciencemagazine piece w/@cjguerrini & Amy McGuire: https://science.sciencemag.org/content/360/6393/1078 …. Longer ago and longer (by far) in@StanLRev: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2298286 … -
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Natalie Ram
@ubaltlaw@UMDLaw uses her baby bump as the ultimate scholarly “flex” in showing the involuntary and immutable nature of informational revelation for the children we produce. How do these elements make the forensic use of that information different?#DTCgenome -
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Ooh interesting! Natalie Ram argues that the involuntariness of familial info getting into
#DTCGenome databases means the Third Party Doctrine [which sucks anyway] shouldn’t apply. (here’s her@ColumLRev piece, DNA by the Entirety: https://columbialawreview.org/content/dna-by-the-entirety-2/ …) -
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@VarditRavitsky providing a range of policy/legal choices about how to address new forms of noninvasive prenatal testing#DTCgenome@PetrieFlom
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