Discussion leader: Gary Banks

DNA Privacy.  It is now inexpensive to at least partially sequence a person’s genome.  Companies like Ancestry.com, GEDMatch and 23andMe.com have done it for over 20 million people.  There are other databases where people have uploaded their DNA profile insearch of relatives.  There are also growing databases, some public, with individual’s DNA gathered from medical testing or crime events.  Recently, a cold case of rape/murder was solved by taking DNA from the crime scene and quickly identifying the killer’s cousin that then lead to an arrest.  That’s good to solve a horrible crime but there are also risks and concerns.

Certainties:

1. Almost all of us have, will shortly have, our DNA profile, or that of a close relative, in an on-line database.  It could be from genealogy hobbyists, voluntary samples, medical tests or police actions.  There will be incentives and pressure to be profiled, e.g., Stamford Health will need your DNA profile as part of their standard healthcare program – you may have already consented.  Babies are being tested at  birth.   All those routine blood tests could be stored for medical research.  
2. The massive DNA databases, along with personal medical history will lead to healthcare breakthroughs for both us personally and the public health overall.    Personalized medicine – both treatments and prevention is the future.
3. The DNA databases can be searched with a court order, but many are open and companies will be building their own databases.  It easy to picture an offer for a “free” DNA test (like free email or facebook) if you send them a sample.  Police can simply upload a DNA profile and search for relatives.
4. The predictive value of your DNA profile will improve – or at least people and organizations will believe it is predictive.  Those predictions could involve health,  behavior, intelligence, …
5. Companies and organizations will figure out a way to monetise and benefit from that data.  

I have a bad feeling this is already out of control:

1. Companies such as insurance, pharmaceutical, your employer,  police, or schools will exploit your DNA profile.  Given the experience with google and facebook, any sort of opt-in or consent laws will be ineffective.   Think of spam from a pharmaceutical company “Your DNA profile indicates you are at risk of macular degeneration – take our stuff now and save your eyes. ”  Or “Your child’s DNA profile indicates they will not succeed in our most demanding academic program.”  “Your DNA profile indicates you should not own a gun, have a pilot’s license, or be trusted with children.”  Companies would claim they are providing a public service – and say talk to your doctor.  Modern day eugenics.
2. How about discoveries made from your DNA?  Think of Henrietta Lacks – 17,000 patents derived from her cells without compensation.  A few people survive deadly things – ebola, HIV, cancer, …  Do you deserve compensation if you have some unique and valuable genetic trait that a pharmaceutical company uses?  Legal precedent is you don’t have rights over your bio samples.
3. Can a dating company require genetic testing to claim they only match people who have compatible genetics?  Should you avoid marrying a person who carries the same deadly recessive gene as you?   
4. Most of us would not volunteer our fingerprints or consent to have our phone tapped.   Yet we don’t even have to directly have our DNA sequenced to be visible to the government.  It is legal to collect a coffee cup or cigarette butt to get a DNA sample.  Police departments are using desktop machines, under less than rigorous laboratory protocols by people with limited training.   Seems like fishing is inevitable – e.g. browse for local people who “lack empathy”.  Risk of false charges or being brought in for questioning.
5. Are we capable of responsibly interpreting the data?  The public is not allowed to write their own prescriptions.  Could people have their lives ruined – be filled with anxiety, get dangerous or useless medical treatments, fall prey to quacks, even be driven to suicide by not having a medical professional interpret the data?  Google “headache” to get a scare.   
6. Already the DNA testing companies warn people they may be upset by what they find.  Your parents and siblings are not biologically who you thought they were.  Sperm donors being identified.  A sibling you didn’t know you had.  There are happy endings for sure – but not always.
7. Lack of checks and balances.  Without them there will be abuse.    

From The Conversation:

Your genome may have already been hacked. https://theconversation.com/your-genome-may-have-already-been-hacked-95763 

DNA apps promise deeper insights for consumers – but at what cost? https://theconversation.com/dna-apps-promise-deeper-insights-for-consumers-but-at-what-cost-96257

Americans want a say in what happens to their donated blood and tissue in biobanks  Americans want a say in what happens to their donated blood and tissue in biobanks

5 biggest risks of sharing your DNA with consumer genetic-testing companies https://www.cnbc.com/2018/06/16/5-biggest-risks-of-sharing-dna-with-consumer-genetic-testing-companies.html

Genealogists Turn to Cousins’ DNA and Family Trees to Crack Five More Cold Cases https://www.nytimes.com/2018/06/27/science/dna-family-trees-cold-cases.html

A Mother Learns the Identity of Her Child’s Grandmother. A Sperm Bank Threatens to Sue.

https://www.nytimes.com/2019/02/16/health/sperm-donation-dna-testing.html

How your third cousin’s ancestry DNA test could jeopardize your privacy. Public DNA databases can be used to find you — even if you never shared your own DNA. https://www.vox.com/science-and-health/2018/10/12/17957268/science-ancestry-dna-privacy

We will find you: DNA search used to nab Golden State Killer can home in on about 60% of white Americans https://www.sciencemag.org/news/2018/10/we-will-find-you-dna-search-used-nab-golden-state-killer-can-home-about-60-white

How an Unlikely Family History Website Transformed Cold Case Investigations. Fifteen murder and sexual assault cases have been solved since April with a single genealogy website. This is how GEDmatch went from a casual side project to a revolutionary tool. https://www.nytimes.com/2018/10/15/science/gedmatch-genealogy-cold-cases.html

When a DNA Test Reveals Your Daughter Is Not Your Biological Child https://www.theatlantic.com/science/archive/2018/10/dna-test-divorce/571684/

23 and me Privacy Policy. https://www.23andme.com/about/privacy/

Ancestry.com Privacy Statement https://www.ancestry.com/cs/legal/privacystatement

The FBI’s CODIS database: https://www.fbi.gov/services/laboratory/biometric-analysis/codis

Also on CODIS:

An overview of human genetic privacy from the NIH: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5697154/

Coming Soon to a Police Station Near You: The DNA ‘Magic Box’

https://www.nytimes.com/2019/01/21/science/dna-crime-gene-technology.html

http://www.law.nyu.edu/news/ideas/erin-murphy-forensic-dna

Familial DNA Searches and the Law

https://criminal.findlaw.com/criminal-rights/familial-dna-searches.html

ACLU: The Police Want Your DNA to Prove You’re Innocent. Do You Give it to Them?

https://www.aclu.org/blog/privacy-technology/medical-and-genetic-privacy/police-want-your-dna-prove-youre-innocent-do-you

FamilyTreeDNA Admits to Sharing Genetic Data With F.B.I.

https://www.nytimes.com/2019/02/04/business/family-tree-dna-fbi.html

Jerry Westrom Threw Away a Napkin Last Month. It Was Used to Charge Him in a 1993 Murder.

https://www.nytimes.com/2019/02/17/us/jerry-westrom-isanti-mn.html

https://today.uconn.edu/2015/09/privacy-security-and-the-legacy-of-911/

Electronic Frontier Foundation on Medical Privacy

https://www.eff.org/issues/medical-privacy

Dear Mr. Banks,

Thank you for your inquiry.  Generally, and depending on the test ordered by your physician, blood samples are retained anywhere from 3 days to 2 weeks after the testing is performed, after which they are appropriately discarded.  

Regards,

Todd M. Lieval

Discussion leader: Bryan Hooper

Opening Notes:

BREXIT: Why should we care?

At a seminar I attended in the UK many years ago each participant was asked to consider the future of their industry or professional group.  When it was his turn to make his forecast, a lawyer stood up and declared that “the legal profession has no future, but it has a long and glorious past stretching in front of it.”  Some might say the same about the United Kingdom of Great Britain and Northern Ireland as it wrestles with the problems created by the vote in June, 2016, to exit the European Union. 

To help answer the question in the title above it might be helpful to have an understanding of some of the history of the UK, the development of the EU, and how the UK came to be in its current situation – if the situation ever becomes clear, that is.

1. The United Kingdom (UK)

Great Britain was created by the English annexing Wales in 1535 and 1542 and forming a union with Scotland in 1707.  The kingdom of Ireland was added in 1801, and Northern Ireland was formed in 1922 when what became Eire seceded from the kingdom and established an independent country.  The combination of Great Britain and Northern Ireland is the United Kingdom.  All four countries elect members to the UK parliament that sits in Westminster, London, and, in addition, Wales, Scotland and Northern Ireland each has a separate devolved parliament.  The total population of the UK is 66 million, with England at 55.6, Scotland 5.4, Wales 3.1 and Northern Ireland 1.9 million.  Gross domestic product of the UK is the fifth largest in the world at an estimated $2.8 trillion in 2018 out of a world total of $84.8 trillion.  To put this in perspective, the US GDP was $20.5, China $13.5, Japan $5.1 and Germany $4.0 trillion.

2. The European Union (EU)

It is ironic in today’s discombobulated Brexit climate that in 1946 Winston Churchill, a Conservative statesman, was one of the early advocates of a United States of Europe.  The EU traces its origin to the formation of the European Coal and Steel Community created during the recovery from World War II by the Treaty of Paris in 1951.  The subsequent Treaty of Rome in 1957 led to the establishment of the European Economic Community comprising six countries: West Germany, France, Italy and the Benelux nations.  The UK eventually joined the EEC in 1973 having been rebuffed initially by the French in 1963. 

In 1975 the UK held its first ever nationwide referendum, and it concerned staying in the EEC.  The government recommended the UK should remain in the group, and the electorate voted 67% in favor on a 64% turnout.  In 1993 the Maastricht Treaty came into effect for the 12 countries of the EEC.  That treaty established the EU together with European citizenship, it ensured the free movement of people, goods, services and capital within the market, and enabled the enaction of legislation covering justice, home affairs and trade policies.  It also laid the foundation for the common currency, the euro: the EU now has 28 member countries and 19 of them use the euro.  The population of the EU is 513 million and GDP in 2018 was estimated at $18.8 trillion, approximately 22% of the world’s GDP, compared with the US share of 24%.

3. The Brexit Referendum

(a) The political timeline

David Cameron, leader of the Conservative Party, won an unexpected victory over the Labour Party in the UK general election in 2010.  The Conservatives did not, however, gain sufficient votes to form a clear majority and they allied with the Liberal Democratic Party to form a coalition government with Cameron as Prime Minister.

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Animosity in the UK toward the EU had gradually increased since the terms of the Maastricht Treaty were enforced in 1993, and the Treaty of Lisbon exacerbated the situation when it was implemented in December, 2009.  This gave increasing power to the EU parliament and also fueled the anti-immigrant feelings in the UK which had been developing and strengthening as the EU expanded its number of member countries and assigned more power to the European Parliament in Brussels.  During and after the world financial crisis in 2008 the resentment intensified with many in the UK objecting to immigrants taking away jobs from the UK population and some allegedly living off the UK by taking advantage of social welfare handouts.  Further dislike of the EU was fostered by the crisis in the Eurozone creating economic uncertainty, and the rise of terrorism that was also blamed on immigrant factions.  Pressure built up to fix the UK economy and react to the growing power arrogated by the EU.  

Cameron called a general election in 2015 during which he promised another referendum on staying in the EU.  The conservatives won enough seats this time to form a majority government (over 326) without the assistance of another party.  In the table below are shown the seats won in 2015 compared with 2010 and also the percentage of the vote won by the main parties:

Note in 2015 the growth of the Scottish National Party (SNP), the decline of the Liberal Democrats, and the share of the vote won by the UK Independence Party (UKIP): 

• The electorate in Scotland had rejected separating from the UK in a referendum held in September, 2014, voting 55% to stay, with a very high turnout of 85%. However, the whole process of the independence plebiscite stirred nationalist sentiment and that carried over to the UK general election in 2015 as the SNP won 56 of the 59 available seats in Scotland.
• The Liberal Democrats paid the price for being in coalition with the Conservative Party in the last government, losing 49 of the 57 seats they held previously.
• The Democrat Unionist Party (DUP) retained 8 of the 18 seats available in Northern Ireland.
• Labour won 25 of 40 seats in Wales.
• The Conservative Party took 316 of 533 seats in England.
• In 2014 UKIP candidates took 27% of the vote in the UK for the European Parliament, ending up with 24 out of the 73 seats assigned to the UK, and greater than the seats won by either of the two major UK parties. In the 2015 UK general election UKIP picked up only one seat, but their 13% share of the total vote was a signal of what was to come in 2016.

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(b) The fateful vote

Prime Minister David Cameron and his government passed the Enabling Act in February, 2016, authorizing the referendum to be held for remaining or leaving the EU, and announced the date of June 23, 2016, for it to occur. 

The government threw its support behind the Remain camp, but Cameron allowed Conservative Party members of parliament (MPs) and members of his Cabinet to make their own decisions on which side to support.  Seven cabinet members joined the Leave faction.  Boris Johnson, former Mayor of London and an MP, plus Michael Gove, Secretary of State for Justice, together with UKIP leader, Nigel Farage, spearheaded the Leave side.  Arguments for Remain were that the UK would risk prosperity, jeopardize national security, lose jobs, delay investment in the UK, and lose influence in world affairs if they left.  The Leave group argued that the EU had a deficit of democracy, it undermined national sovereignty and prevented the UK from making better trade deals.  Leaving would give control of immigration back to the UK and save billions of pounds in membership fees.  The Leave group appeared to take better advantage of social media than the Remain team, spreading the memes that emphasized the potential danger of immigration from Turkey if it became a member, and also trumpeting that leaving the EU would free up £350 million a week ($24 billion annually) to be spent on the UK National Health Service.  Neither of these messages were countered effectively by the Remain side.

The results of the referendum surprised everyone – to say the least.  The overall vote in the UK to leave the EU was 52% versus 48% to remain, and the turnout was 72% of the electorate (compared with a 64% turnout in 1975 when 67% to remain in the EEC).  On a country basis, England voted to leave by 53.4%, and Wales at 52.5% also voted to leave.  In England only Greater London voted to remain, while all other regions opted to leave.  Scotland at 62.0% and Northern Ireland at 55.8% voted to remain in the EU.

Prime Minister Cameron announced his resignation the next day and Theresa May, the Home Secretary, took over on July 13, 2016.  May was one of the ministers who had supported the Remain campaign.  On March 29, 2017, the UK government invoked Article 50 of the Treaty on European Union to leave the EU by March 29, 2019, and so began the process of planning and negotiating terms of the withdrawal.

(c) The 2017 election

On April 18, 2017, Theresa May called for a general election in order to strengthen her hand in negotiations with the EU, and set the date for June 8^th.  Strong support for her government diminished considerably by the time the election occurred, and the Conservative Party lost 13 seats. They ended up 9 short of an overall majority, but continued in power as a minority government with the backing of the 10 votes of the DUP from Northern Ireland.

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 (d) The draft agreement and the options

May then proceeded to negotiate with the EU with a view to avoid permanent membership of the single market or the customs union and to repeal membership of the EU.  In July 2018, the PM’s cabinet agreed to the Chequers plan which outlined the proposals made by the UK government, and in November, 2018, the draft Agreement on the Withdrawal of the United Kingdom from the European Union as developed between the UK and EU was published – all 585 pages.

The proposal allows for the UK to transition out of the EU over the period March 29, 2019 to December 31, 2020.  In the interim, it will remain in the customs union, continue to pay into the EU budget and apply EU laws while negotiating further with the EU on new trade deals.  The UK will have no representation in making decisions in the EU during the transition.  In case no agreement is reached by the end of 2020 there is a backstop agreement that says the UK will remain in a customs union with the EU, thus avoiding the necessity of setting up a hard border with customs checks between Northern Ireland and Eire, which would avert a potential conflict in this previously troubled area.  This part of the agreement is difficult for Brexit supporters to accept. They have consistently argued that Britain must be able to exit any UK customs union with the EU as and when it wants so as to be able to pursue free-trade deals around the world.  The DUP objects to the backstop since it treats Northern Ireland differently from the rest of the UK and could promote a renewal of talk and action on reunification of Ireland and leaving the UK.

The draft agreement was submitted by the UK government for approval to parliament on January 15, 2019, and went down to defeat by 432 votes to 202, an extraordinary and record margin of 230 for a government loss.  Nonetheless, the Prime Minister survived a vote of no confidence the next day by 19 votes.  Non-binding amendments were then approved by parliament on January 29 that rejected a no-deal Brexit and authorized the Prime Minister to return for talks with the EU to alter the Irish backstop to allow for alternative arrangements. 

The EU negotiators have already stated there will be no changes made to the draft agreement, but meetings are continuing, and Prime Minister May will present revised proposals to parliament later in February.

(e) What will happen?

There are several possibilities:

• The chaotic solution nobody wants is that a hard Brexit occurs on 3/29/19 with no agreement in place.
• The UK and EU come to a new arrangement over the Irish backstop, and a more amicable divorce is agreed between the two participants.
• The UK decides to have another referendum if parliament votes for it. Additionally, Scotland has the right to vote for independence in a second referendum once Brexit terms are decided, and might subsequently apply for membership of the EU.
• The decision is deferred for a few months, although that could create problems since there are elections in May for the EU parliament and the UK theoretically would still have to vote to fill their EU seats.

4. Why should we care?

An open question, and one for discussion at our meeting on February 21, 2019.

To get everyone started on their reading of the subject of Brexit I would suggest the article on the Conversation website:  https://theconversation.com/whats-the-deal-or-no-deal-with-brexit-heres-everything-explained-110024

Another excellent source is the BBC news website: https://www.bbc.com/news  

to find “All you need to know about Brexit.”  Enter Brexit in the search box to see a summary of the situation and links to give you greater insight into several subjects.

For those of you interested in delving into more background go into Wikipedia and search for the individual articles on the United Kingdom, the European Union, and Brexit.  More data regarding the EU can be found on their website, Europa.eu 

The Malign Incompetence of the British Ruling Class

https://www.nytimes.com/2019/01/17/opinion/sunday/brexit-ireland-empire.html

Discussion leader: Jim Phillips

Intelligence Squared Debate   https://www.intelligencesquaredus.org/debates/social-media-good-democracy-0

Hard Questions: What Effect Does Social Media Have on Democracy?https://newsroom.fb.com/news/2018/01/effect-social-media-democracy/

Facebook Says Social Media Can Be Negative For Democracy  https://www.npr.org/sections/thetwo-way/2018/01/22/579732762/facebook-says-social-media-can-be-negative-for-democracy

Guest Post: Is Social Media Good or Bad for Democracy?https://newsroom.fb.com/news/2018/01/vromen-democracy/

Without Transparency, Democracy Dies In The Darkness Of Social Media  https://www.forbes.com/sites/kalevleetaru/2018/01/25/without-transparency-democracy-dies-in-the-darkness-of-social-media/#41017c4a7221

Why social media may not be so good for democracyhttps://theconversation.com/why-social-media-may-not-be-so-good-for-democracy-86285

Discussion leader: Charlie Goodyear

Summary :

SINGLE PAYER HEALTHCARE SYSTEMS
USA Healthcare System
-17% of GDP (was 7% in 1971) vs. 9% Canada,10% UK, 10% Germany
-Coverage :
+50% Employer (155 million people, cost $20,000/family, employee pays
$5000)
+14% Medicare (+/- 55 million people)
+12% Medicaid, Veterans, Native Americans (+/- 50 million people)
+ 7% ACA purchased (+/- 20 million people)
+ 8% Emergency Room, Other
+ 9% Uninsured (+/- 30 million people)- 80% US citizens
-Drug costs : $1000/per person/year vs. OECD $500
-Estimated 100-130 million people have “pre-exsisting conditions”
-Life expectancy below OECD countries, Infant mortality higher
-Reasons for higher costs vs OECD countries :
+ Technology and drugs ( eg more MRIs per capita, no drug price controls)
+ Obesity (35% vs 19% OECD) and chronic illnesses (32% of Medicare costs
cover the last two years of life)
+ Much higher administrative costs (4% of GDP), double the staffing vs Canada
-Healthcare costs a major factor in personal bankruptsy( !0 million have bills they can’t
pay )
Canada Healthcare System
-Single payer system covering 100% of the population -no co-pays or deductables
-Doctors and hospitals privately owned and managed within system rules
-Managed by Provincial governments who pay all doctor and hospital charges
-System funded 50/50 with Federal government
-Provinces set prices and proceedures that comply with Federal requirements
-No private insurance allowed except for drugs and dental not covered by System
-Heavy involvement in drug pricing and approval, cost benefit analysis
-Essentially no US type media drug advertising
-Doctors earn about 2/3 of what US doctors earn/year
-Lower availability of medical devices (eg. 75% fewer MRIs per capita than US)
-Open heart and transplant surgery restricted
– Major problems: waiting times for referral to specialists (+/- 16 weeks ), doctor
choice limited, long delays for elective surgery
United Kingdom Healthcare System
-Single payer system covering 100% of the population-no co-pays or deductables
-Doctors are government employees and hospitals are government owned
-Managed by major regional authorities (ie Britain, Wales,Scotland, etc)
-Drug prices controlled by the government, strict cost/benefit analysis. No US
type media drug advertising
-Drug prescriptions cost about $12/ each, free for children.

– No dental coverage for adults
– Doctors earn about 2/3 of what US doctors earn
– Individuals may purchase insurance coverage with doctors in private practice
– Major problems: Long wait times (+/- 10 weeks for general surgery), limited availabiliy
of new(expensive) or experimental treatments, cost/benefit analysis, lack of mental
health services, very long delays for elective surgery
-Per capita costs $4K/year vs US $10K/year
-Many say “Underfunded but not broken “
Germany Healthcare System ( An alternative to “single payer” ??)
-An insurance based system with non profit and for profit insurers
-Covers 90% of population- required participation for all but highest earners
-Funded by 50/50 contribution by employers and employees -15% of earnings
up to about $70K/year (2014 data)
-Private doctors and hospitals but highly regulated
-No deductables and low co-pays -children are free
-Managed by regional authorities via “sickness funds” that are used to control
total costs
– Drug prices are controlled, cost/benefit analysis, no US type public advertising
– Doctors earn about 2/3 of US doctors/year
– Per capita costs less than 1/2 of US
– Surveys indicate significantly higher public satisfaction with the system vs US,
Canada or UK
( The relationship between the insurance companies, doctors, hospitals ,employers,
employees individuals and the regional government bodies is unclear and needs
further analysis and understanding)

Comparisons of Health Care Systems in the United States, Germany and Canada

https://dpeaflcio.org/programs-publications/issue-fact-sheets/the-u-s-health-care-system-an-international-perspective/

https://theconversation.com/why-market-competition-has-not-brought-down-health-care-costs-78971

https://theconversation.com/medicare-for-all-could-be-cheaper-than-you-think-81883

Single Payer Healthcare

Universal Coverage