While researching my previous post about MyHeritage’s new integration with 23andMe, I came across a new study being done by 23andMe on Irritable Bowel Syndrome (IBD) and its related diseases – Ulcerative Colitis and Crohn’s Disease (two very common diseases, particularly among Ashkenazi Jews). The study is being sponsored by drug company Pfizer, and it seeking 10,000 participants.
To join the study you must have been diagnosed with either UC or Crohn’s by a doctor, live in the US, have access to the Internet, and be at least six years old (from 6 to 17 you must have parental consent). If you qualify, they send you a saliva collection kit with a return envelope, and you must send back a saliva sample and fill out some online surveys related to your condition.
There’s actually one more qualification for the study, or rather a disqualification – if you are already a customer of 23andMe, you cannot participate in this study. If you are already a customer you can fill out some surveys, but it’s not clear if your DNA data will be included in the study.
Interestingly, both Ulcerative Colitis and Crohn’s Disease are significantly more common among Ashkenazi Jews than the general population. This probably means that Jewish participants in this study will outnumber their percentage of the general population. It also might mean that if you have the genetic markers that predispose you to these diseases, joining this study might connect you to a large number of potential relatives, since the group is self-selecting, and if the genetic markers are familial, then you’re more likely to find genetic relatives than on average when there are 10,000 other people with the same condition as you.
So what do you get for joining the study, besides knowledge that you are helping further scientific research that might one day benefit you personally?
Well, for one you get lifetime access to 23andMe’s Personal Genome Service. For the moment that only deals with genetic genealogy, not the health information that 23andMe previously offered (and still offers to customers who signed up before the ban), but that might return in the future. However, if you’re reading this post, chances are you are interested in genealogy, and if you have one of the very common diseases they are researching, and have not yet signed up for 23andMe, this will save you a $99 sign up fee for their service.
The only thing different about the account on 23andMe you receive compared to a regular 23andMe customer who would sign up at the same time, is that it seems you cannot participate in the customer forums. The other difference is of course that you know your DNA is being contributed to a specific study on a disease you have.
So if you have Ulcerative Colitis or Crohn’s Disease, and have not yet signed up for 23andMe, this is a good opportunity to further science and to get access to 23andMe for free. Go check out the 23andMe IBD Study page for further information.
Recently I came across an interesting web site, called Mapire, which displays historical maps of the Hapsburg Empire. The maps currently correspond to three military surveys carried out in the time periods 1763-1787, 1806-1869, and 1869-1887. These periods cover different geopolitical periods, when the areas under control were variously called the Hapsburg Empire, the Austrian Empire, the Austro-Hungarian Empire. The military maps were created at a scale of 1:28,800. What’s really neat about the maps on Mapire, is that they are all synced to current digital maps, so when you zoom in on one of the military maps, it shows on the left side of the window, while the current digital map is shown on the right. An example, for the town of Kańczuga:
Cadastral Maps, another kind of state-created map, were created at a scale of 1:2,880, or ten times the resolution. This site does not yet have Cadastral Maps, although some Cadastral Maps for the Galicia region can be found in the Gesher Galicia Map Room.
Recently I was asked about ordering a copy of an ancestor’s Social Security application. The application, called an SS-5 Form, is usually used for genealogy to get the names of the applicant’s parents. If you don’t know the birth date of a relative, it can also be used for that purpose, although that information is available in the public SSDI databases (and parents names are not).
The Social Security Death Index (SSDI) is a database of deaths recorded by the Social Security Administration. It’s official name is actually the Death Master File (DMF). When published online for genealogy purposes it is referred to as the SSDI. According to FamilySearch, the SSDI includes an increasing percentage of recorded deaths as time goes on from 1962 (when the index started):
The index includes about 50 percent of deceased persons from 1962 to 1971 and about 85 percent of the deceased persons from 1972 to 2005. It also includes a few deaths from 1937 to 1961.
That said, the database itself shows something a bit different. If you search for all deaths in the database from 1937 to 1961, there are 740,152 results. That’s a bit more than ‘a few’. What’s going on here? Even weirder, if you search for records before 1937 (when SS started) there are also records (a bit over 2500). Something is obviously wrong with these records. Keep these imperfections in mind when using the data. If you’re wondering why the percentage increases, it’s because not every working person was registered in the early days of the system. As time went on, more people participated in social security, and thus more people are also recorded in the SSDI.
So assuming your relative is among those recorded in the SSDI, how do you find their record, and assuming you find it, how do you get the record? One thing first…
Restrictions on Usage
You might have read that congress has criticized the online publication of social security numbers and accused online companies that do so of making identity theft easier. I have argued in the past that in fact that is backwards, but putting that aside, some online services have put restrictions on access to SSDI data, such as not showing anyone who died in the past 10 years, etc. Recently a law was passed making it impossible to order SS-5 Forms for anyone who died in the previous 3 years. The law also effects the publication of new deaths to the SSDI, but won’t kick in until March (see this article at the Legal Genealogist for more information on that).
Whether 3 or 10 years, however, that doesn’t affect genealogists at all due to another government policy change. Back in 2011, the Social Security administration changed the access rules, where before you could order a complete SS-5 form for any deceased person born more than 70 years ago, they increased it to anyone born more than 100 years ago. Additionally, if the death of the application cannot be proved, then full records are not available for 120 years after the applicant’s birth.
So it’s currently January 8, 2014. That means if the person is known to be dead (i.e. you have a death certificate, or their death is recorded in the SSDI) then they need to have been born before January 8, 1914 if you’re going to be able to get a full record that shows the applicant’s parent’s names. If they don’t show up in the SSDI and you don’t have a record of their death (but you do have a social security number), then they have to have been born before January 8, 1894 if you want to get the applicant’s parents names.
Don’t Order Records That Won’t Help
Keep in mind one important thing. If the person was born more recently than 100 years ago, you can still order a copy of the SS-5. The Social Security Administration will happily take your money and send you a copy of the record, however, they will block out the names of the parents in the copy they send you (making the record mostly useless for genealogical purposes).
Searching the SSDI
To find a person’s social security number (and at the same time confirm that they are deceased according the Social Security Administration) you can search the SSDI on several sites. One good site is FamilySearch’s SSDI search page. Another public search page is Mocavo’s SSDI Search page. I will say that I believe FamilySearch’s to be the most up-to-date database, and they also post what date the database was updated – as of today it was updated with data up to November 30, 2013 – less than two months ago. Indeed my grandfather who passed away in September is listed in the FamilySearch database, but not in the Mocavo one.
So let’s say the relative you’re researching was born more than a hundred years ago. You find their Social Security number, either through the SSDI or through other means. How do you order a record? Well that’s actually easy. You just go to the Request for Deceased Individual’s Social Security Record page, pay your $27 and order the record.
Interestingly for two dollars more you can order the record even without the Social Security number. This is odd because searching for the record without the number would seem much more difficult and more costly than $2.
A Final Thought on the Restrictions
As I mentioned, my grandfather passed away in September. If I wanted to order his SS-5 form, according to the 2011 regulations I wouldn’t be able to order his un-redacted SS-5 form until he would have been 100, which in his case is not too far away – he was 98 – so July 2015. However, because of the new law recently passed, I can’t order the SS-5 at all until 3 years have passed, so September 2016. An extra year and a bit. In general, however, the restriction is likely to be on the 100-year regulation.
Everyone now needs to wait 3 years on ordering an SS-5 now, but if a relative passed away at the age of 80, you’d have to wait 20 years before you could get the un-redacted SS-5 form with the name of the relative’s parents on it. If your relative died before 2011 and you had ordered the records before the regulatory change then, you could have ordered the same SS-5 Form immediately, and received it un-redacted (since the relative was over 70).
Some may be wondering how this intervention by the FDA affects genetic genealogy? The answer is that directly, it doesn’t affect genetic genealogy at all. This is not an attack at all on genetic genealogy, which is why other DNA testing companies such a Family Tree DNA (FTDNA) and Ancestry have not been similarly contacted by the FDA, even though they use the same, or very similar, testing devices that 23andMe use.
How can the FDA regulate a device being used by 23andMe, but not when it’s used by FTDNA and Ancestry? The answer is that neither FTDNA nor Ancestry use the data collected to provide any health-related information. In fact, I’ve heard FTNDA even does not collect markers used for health analysis, even though they’re available on the chips they use to do their DNA analysis.
Why don’t FTDNA and Ancestry use this data? Well, for one reason, they don’t want the FDA breathing down their necks. In addition, both FTDNA and Ancestry are focused on genetic genealogy. While genetic health information may be of interest to those researching their families, even relevant in many cases to determining if someone is related to you or not, it’s not a critical feature of genetic genealogy.
23andMe, on the other hand, has always been interested in providing analysis of health data found in one’s DNA. Initially, 23andMe offered separate health and genealogy tests. Later they combined everything in one offering. The reason the FDA sent their warning letter to 23andMe, is solely related to the health claims made by 23andMe. How will this effect 23andMe customers? Unless they provide a satisfactory answer to the FDA within the initial 15 day period, which frankly would seem unlikely, they will need to stop sending out genetic testing kits. It’s not clear if they will have to stop providing analysis of health data to existing customers.
Right now, 23andMe has ceased offering health information to new customers – although the FDA could theoretically stop this as well. Presumably they will attempt to come to a deal with the FDA and offer this health information to their new customers in the future. In any case they will be collecting the health markers from new customers and offering them the raw data that they can analyze it themselves.
The real problem would be if 23andMe is prevented from marketing or providing health-related offerings for an extended period of time, and cannot make enough money to remain a going concern. While Ancestry and FTDNA make all their revenues from genealogy-related services, it would certainly appear that 23andMe was heavily focused on the health side of their business. Without the health-related revenue, the company may not be able to keep the doors open. I suspect there is little interest by 23andMe to transition to a genealogy-only company, even if they could do so profitably.
What does this mean to genealogy customers of 23andMe? It means you should be downloading your raw data now, if you haven’t already. Downloading your raw data will allow you to upload the data to another genetic genealogy site in the future. FTDNA, for example, will let you upload 23andMe data to their service for $49. This adds you to their matching database, same as if you had done the Family Finder test through them. They will not keep any of the health-related data, but there are third-party tools that will let you do your own analysis of the data. Some tools are listed by ISOGG (Autosomal DNA Tools), on David Johnson’s site for his 23++ Chrome extension (Getting more from your data), and in Blaine Bettinger’s article What else can I do with my DNA test results? on his The Genetic Genealogist blog. I doubt any of these resources would completely replace the information and analysis that 23andMe provided to its customers, but at least the data won’t go to waste.
On a philosophical level, I think we as individuals deserve the right to access our genetic data without intermediaries. I think the government should take a step back and only intervene in situations where there is clearly fraud being carried out. It is not a coincidence that health insurance companies and organizations that represent doctors have lobbied against direct-to-consumer genetic testing. While most individuals do not have the ability to analyze the data themselves, that’s why 23andMe was developing tools on their site to help in the analysis. I doubt most doctors would be able to provide any analysis of one’s genetic data without similar tools, and if that’s the case, why not allow individuals to see the same information? Of course it’s possible that some individuals, presented with a higher likelihood of developing some horrible medical condition, could freak out and do things detrimental to their health, in most cases this seems unlikely. How many people would have medical procedures carried out without additional targeted testing? What doctor would allow medical intervention without further testing? In short I think 23andMe has the right idea here, but they’ve handled their interaction with the FDA badly. Hopefully they’ll be able to figure out a compromise before the inability to market their health offering affects their ability to continue as a company. That’s where their ability to offer genetic genealogy services could also cease.
I would hope they would transition their database to another company, but considering all the extra privacy steps they have for their health data, it’s likely they would not be able to transfer their entire genealogy database to another company. It’s even possible the company could close up and not offer a way to download your data at that time. That’s why I advocate downloading your raw data now. Personally, if I was at FTDNA, I’d be offering an end-of-the-year deal for $25 to import data from other web sites…
For reference, here’s the statement recently posted on the front page of 23andMe explaining the situation:
Welcome to 23andMe.
At this time, we have suspended our health-related genetic tests to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process.
We are continuing to provide you with both ancestry-related genetic tests and raw genetic data, without 23andMe’s interpretation.
If you are an existing customer please click the button below and then go to the health page for additional information. If you are a customer who purchased before November 22, 2013, you will still have access to your health-related results.
We remain firmly committed to fulfilling our long-term mission to help people everywhere have access to their own genetic data and have the ability to use that information to improve their lives.
Upon entering the site, please confirm you understand the new changes in our services.
I understand that 23andMe only sells ancestry reports and raw genetic data at this time. I understand 23andMe will not provide health-related reports. However, 23andMe may provide health-related results in the future, dependent upon FDA marketing authorization.
This past summer I visited Toys R’ Us in Times Square with my family and was interested to see that they had a photographer at the entrance taking photos of families as they walked in. For what purpose you ask? Well, if you walk a little further inside the store there was a little booth, and you could see your photo (it is digital after all, and thus immediate) and have them print you a souvenir photo for if I recall correctly $20. That was the first time I had ever seen souvenir photos in a store. I suppose a store with its own ferris wheel inside could be considered a destination in and of itself, however.
In my experience, souvenir photos have primarilyy been for things like rollercoasters, where photos of people are automatically taken at the most terrifying spot on the ride. It’s not a photo you can take yourself, so they probably do pretty well selling those. I also recently saw souvenir photos at an aquarium. I guess any family-oriented destination could support such souvenirs, although if it’s just as easy to ask someone else to take your picture with the latest cell phone, then they probably don’t sell as many.
So what does any of this have to do with our grandparents and their social lives? While we can easily take pictures these days, back in our grandparent’s day it would have required carrying a big camera and flash, not something you’d want to do on a night out. Even if you did bring your camera, you probably couldn’t ask a waiter or waitress to snap a photo of you using your big bulky camera. Capitalizing on this fact, like the rollercoaster photos of today, nightclubs and restaurants would offer their own photographs as souvenirs. Either using their own staff, or with the help of a local photo studio, photographers would roam the club and take table photos.
I don’t know enough about these photos to know when the people at the table would get the photos, but considering the amount of time it took to develop the film, then make the prints, presumably these photos were mailed to the customers. The photos would be inserted into a folder with the name of the restaurant or club on the front. I’ve discovered several of these folders with photos of my grandparents, and perhaps I’m romanticizing the past but it sure looks like these clubs were much nicer and more fun than the places around today. I’m not going to post the photos here, but I am going to post the folder covers so you can see what these souvenir folders looked like. Arguably they were an art form onto themselves.
Of these clubs, certainly the Copacabana is the most famous. Some iteration of it still exists, although it has moved many times. Note the logo on the web site is identical to the image on the folder above. The location on the folder image is the original location where so many famous musicians performed.
The only other location that I know personally is Tavern on the Green, which is also the only place I’ve been to myself. Tavern on the Green went bankrupt a few years ago, although it is coming back apparently.
Lou Walters, listed as the proprietor of the Latin Quarter, was none other than the father of journalist Barbara Walters. He founded the club in 1942, and eventually left the business in the 1950s. Like the Copacabana it hosted some of the most famous entertainers of its day (and was a major competitor of the Copacabana). In 1989 the building was torn town to make way for a hotel. Oddly enough I lived down the block from a later iteration of the club, which was on Broadway near the corner of 96th St. I remember the noise well, although I had no idea at the time that the club was the continuation of a famous nightclub started in the 1940s.
Bill Miller’s Riviera was a club bought by Bill Miller in 1945, and which existed until 1953 when it was demolished to make way for the Palisades Parkway. Bill Miller apparently stole talent from the Copacabana by paying them significantly more. After the Rivera closed, Miller moved to Vegas where he managed talent at several casinos. Bill Miller’s daughter was none other than Judith Miller, the former NY Times reporter made famous going to jail for refusing to divulge a source connected to the Valerie Plame case. What is it with nightclub owners with journalist daughters? Bill Miller died in 2002 at the age of 98 – an obituary was published in the NY Times.
Briefly, Cocoanut Grove in the Ambassador Hotel existed until 2005. The hotel itself was famous for hosting several years of the Academy Awards, and infamous as the site of Robert F. Kennedy’s assassination.
French Casino in the Hotel Paramount was perhaps named after a very famous club that had previously been open only a few years in the 1930s. A write-up found in the Fulton History newspaper collection gives you an idea about the older club with the name. The later incarnation, of which this souvenir folder came from, was apparently opened by a Syrian refugee Nachat Martini, who got started in Paris opening cabarets and opened many in Paris before coming to New York. I haven’t found a ton of information about it, although I did find this program from a revue starring Sugar Ray Robinson, who apparently went into show business after his boxing career, but only lasted a month at this club. In this article from 1952, it says the cabaret show used $140,000 in costumes designed in Paris (that’s over a million dollars today).
I couldn’t find the Arabian Room anywhere. Bill Maksik’s Town & Country was a famous club in Brooklyn. Billy Graham (the concert promoter, not the evangelist) worked there as a waiter before he became famous. Las Catacumbas was a club in Mexico City, which closed its doors in the 1990s, although I haven’t been able to find much about it except indirectly.
More About Souvenir Photo Folders
Looking around online, I see that you can find some of these folders for sale on eBay (like this, this, and this).
More interesting is a single woman’s collection that includes the folders and the photos that were inside them. The site is called Arkiva Tropika, and covers the collection of Mimi Payne. The collection is not just souvenir photos, but other paper ephemera, mostly focused on Polynesian-themes restaurants and the like. To see just the souvenir photos and their folders, follow this link.
Have you found souvenir photos in their folders among your family’s belongings? Did you ever go to any of these clubs? Comment below.
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