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I previously posted a piece about the growing need to manage the personal information about oneself on the Web. The amount of information that persons willingly (in many cases) provide about themselves without thinking is enormous. Therefore, it should come as no surprise that marketers, prospective employers, suitors and even criminals and stalkers can find information and use it whether or not the information correct or not. Unfortunately, the bad news is that once digital information makes it way onto the web, it is likely to remain there into perpetuity and in some cases can never be removed! According to an article in today’s NY Times:

“Snoops who take the time to troll further online may also find in blog posts or Facebook comments evidence of your political views, health challenges, office tribulations and party indiscretions, any of which could hurt your chances of admission to school, getting or keeping a job or landing a date. Many privacy experts worry that companies will use this data against users, perhaps to deny insurance coverage or assign a higher interest rate on a loan.”

Unfortunately, many web users are beginning to realize—the hard way—that providing personal information while building a Facebook, LinkedIn or Twitter profile may not have been such a great idea after all. To that end, reputation management or the ability to remove incorrect or unflattering information from the web has been transformed into a business opportunity for a number of new companies. In the past, the best way to determine the amount of personal information about a person on the web was to key a person’s name into a search engines like Google, Yahoo or Bing.

For those of you who regularly “search yourselves” (it is a very smart thing to do), you know that it takes an inordinate amount of  time to follow each and every one of the links that come up on search results pages. Because of this, many people simply search the first two or three pages of each search. The bad news is that some of the most “juicy tidbits” about a person often do not appear on the first few search pages (mainly because they are not optimized for search) Not to worry, Spokeo.com—a personal information aggregation site that bills itself as “Not your grandma’s white pages”—can quickly find a person’s vital information including age, home value, marital status, phone number, photos and even a home address. 

After entering my name into the Spokeo’s search box (located on the company’s homepage) I pressed enter and viola the location of four persons who shared my name were retrieved. I selected the appropriate person (the one who lives in New Jersey), and as billed, the search results included my name, my address, home phone, the estimated value of my home and even my wife’s first name (she has a different last name)!  The dat were presented in a convenient Web 2.0-lkie profile box. The search that I conducted on me was free. However, for an additional fee I can get a full report from Spokeo that includes additional information about my age, e-mail address, income, hobbies, photos, videos, and even my lifestyle (?). 

While this is pretty shocking and creepy (especially if you don’t want people to find you), the unfortunate thing is that most of the information that the Spokeo search found was likely willingly provided by me while registering or signing up for things at various shopping and social media websites. To wit, there is a lot of information out there on the web about many unsuspecting persons and finding it can be easily accomplished using tools like Spokeo.

In my previous post, I mentioned Reputation.com, a start-up that offers a paid service to clients who want to expunge inaccurate or damaging information about them from the web. Like Reputation .com Abine offers a personal service  called Delete Me but takes the personal data search and privacy paradigm a step further. Abine charges $99 a year for quarterly reports detailing the information available about you online. Further, the company has developed a suite of  personal privacy software designed to “allow regular people to regain control over their personal information while continuing to browse, interact and shop online.”

Its main software product is a web browser add-on called Privacy Suite that according to a blurb on the Abine website “combines disparate privacy tools into a comprehensive privacy system. By putting all the controls in one place, the Abine plug-in makes it easier to control the amount of personal information being collected and stored about you online. Some features include:

• Stopping tracking by hundreds of advertising networks and websites
• Manage all cookies (regular & Flash) and trackers in one place.
• Easily create distinct online accounts for different uses
• Pre-fill registration forms with limited subsets of information
• Shield your real info with disposable emails and phone numbers

So, if you don’t have the time or cannot afford the $400 per year to use Abine’s Delete Me service or its Privacy Suite, you can always try to manage your online reputation by yourself by routinely Googling yourself and manually removing all inappropriate or compromising information about you. Sometimes, you may have to negotiate (or pay) bloggers or data brokers—companies that buys data from other companies and then sells it to companies that collect it— to remove a post or a name from people database sites like 123people.com, MyLife.com, Spokeo, US Search, WhitePages and Peoplefinder.com. If a blogger or data broker refuses to comply with a removal request, one privacy consultant suggests “creating more good content about yourself, like starting a LinkedIn profile and a personal blog, to push down the bad to the third or fourth search results screen where few people bother to look. If the content is defamatory — both false and damaging — or otherwise illegal, hire a lawyer.”

Typically deleted information should drop out of search engine sites with a few weeks. If it doesn’t, you can request for it to be removed. For example, Google offers instructions to accomplish this, but Goggle rarely removed items or content that is not illegal unless the owner of the website where the material is published allows it. Also, despite your best efforts, it may not be possible, in some cases to completely expunge all offensive or damaging online information from the web; you will just have to learn to live with it! Having said that, it may be a good idea to think twice before your provide too much personal information while entering a contest to win a free iPad or free service, joining multiple online shopping site or creating a profile on a social networking site unless the company’s privacy policy is easy to read and understand. 

While most smaller online networking sites like BioCrowd will not sell or share a members personal information to online data brokers or marketing companies, some of the larger ones will allow third parties to access their databases for the right price!

Until next time...

Good Luck and Good Job Hunting (be careful out there)

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There is no question that DNA, genome sequencing and personalized medicine are on their way to becoming part of the American lexicon. While most Americans haven’t a clue as to what these words mean, many have jumped on the “DNA bandwagon” because of television shows like CSI and its derivatives and high profile genetic information companies like 23 and Me, which was co-founded by Anne Wojcicki a Yale undergraduate biology major and wife of Google founder Sergey Brin.

Countless numbers of Americans have sent DNA samples to be analyzed by 23 and Me and other genetic information companies to learn about their ancestry and possible health implications contained in their genetic codes. Although the technologies used by these companies may not be ready for prime time-use for personalized medicine purposes, they are scientifically sound and relevant. Imagine my surprise when I read about a company called DNA11 that promises to create customized art from a person’s DNA. Yup, you heard me correctly—a customized DNA portrait! 

Here is how it works. Customers send a cheek swab (DNA sample) to the company and they sequence it. Then, a personalized DNA portrait is constructed from the code. Clients get to choose the color and size of the portrait and can also elect to have up to four person’s DNA added to it! And the best part is that it only costs $199 (starting price)! Of course, DNA samples are marked with anonymous codes and are supposedly destroyed after portraits are rendered.

DNA 11 is the brain child of Nazim Ahmed a former DNA imaging salesperson and Adrian Salamunovic a web designer. I have to admit that I thought the idea was a cool one! But, then again, I am a geeky scientist and the transformation of science into art is an intriguing proposition! Also, if positioned correctly, DNA11 could help to promote scientific literacy in the US.

The company has been featured in the New York Times, Wired Magazine and others on “The View” CNBC and the Discovery Channel. Moreover, both Nazim and Adrian have reportedly made millions and their products were recently featured on a recent CSI episode. Recently, the company announced that a portion of its revenue will be donated to charity. Nevertheless, I can’t imagine that, these days, most lay people have enough disposable income on hand to spend it on a less-than-useful DNA portrait. That said, I have been known to be wrong in the past. And, I have learned over the years that anything is possible in America--not that there is anything wrong with that!

Until next time...

Good Luck and Good Genetic Profiling!!!!!!!

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I have tried to steer clear of the Facebook frenzy mainly because I don’t like the platform (it is too unwieldy) and frankly, pretty boring. I would be lying if I said I don’t have several accounts and regularly use it to advertise some of my own entrepreneurial ventures. After all, how can 500,000 million users be wrong? 

However, with the release of the movie The Social Network and Mark Zuckerberg’s recent foray into saving Newark, NJ and secondary education, it is getting difficult to avoid entering the fracas (not to mention that it is good for SEO).

While the popularity of Facebook continues to grow, it is becoming increasingly difficult for new and even long time users for figure out how to successfully use the platform. To overcome the difficulties and complexities of Facebook, the folks over at CollegeCrunch.org posted an article to help college students (and others) makes Facebook “less annoying” to use. 

I find this extremely ironic, since college students were the first Facebook users and mainly responsible for its meteoric rise in social media circles! 

10 Ways to Make Facebook Less Annoying 

While Facebook has grown and evolved a whole lot from when it first was created, it seems as though it also seems to be losing some popularity. People who have had Facebook for years have noticed the drastic changes and numerous page layouts and defaults that have changed Facebook in recent years. The following changes could help Facebook turn around its image and be a little less annoying:

1. Friend requests procedure
Unless you have some major privacy settings set on your account, it's fairly easy for anyone you know- or don't know for that matter, to send you a friend request on Facebook. The problem arises when you don't know or care to be friends with that person and you ignore their request. You can then be bombarded by repeated attempts which can be annoying and creepy. Making it impossible for someone to send you a friend request once you have denied them, would make the Facebook procedure a lot less annoying. 

2. College students only
When Facebook first started, only college students and staff were able to join and create profiles. Facebook required you to have some type of university administered email that had to be verified before users could join. Now that just anyone can join, it allows all sorts of people you don't want to be friends with send you friend requests. When you start getting friend requests from your parents, grandparents, aunts and uncles, and then people you don't even know you begin to wish Facebook went back to just letting university students and staff in on the network.

3. Limit status updates
Everyone has someone on their Facebook that updates their status and informs you of every step along the way in their day. Not only can documenting their day on Facebook become extremely annoying, it's also an open door for other people to know where you are and what you are doing. We don't really need to know who's eating what and with whom, who's fighting with their significant other and how drunk someone is, it's best to limit the amount of times a person could update their status a day- it would be a lot less annoying and probably stop a lot of people from yelling at their computer screens or phones. 

4. Eliminate Farmville
While Farmville and other games on Facebook seem to have plenty of followers, the people that don't play these games shouldn't have to be subjected to constantly view their progress in the game. A group has even been started on Facebook that invites discussion and provides info for those that hate games entitled "I don't care about your farm, or your fish, or your park, or your mafia!!!" That group alone has over 6 million members, and is a sign that the elimination of that game and many others would make a lot of people on Facebook less annoyed. 

5. The layout wasn't changed so often
If you've been a user with Facebook over the last several years you'll know that the layout is changed quite frequently. It seems as though just as you are getting used to the current layout, it is changed again and you are left wondering how to navigate through things and don't know where to find certain settings, applications, and general things on your home page or profile. Plenty of Facebook users find this extremely annoying, as sometimes it takes days to figure out and get used to the new layout, for it only to be changed and relearned in a couple of months.

6. Easier and more understandable privacy and account settings
It seems that anytime you are trying to customize or change privacy or account settings, its not very easy to navigate through. It would help a great deal if the privacy settings were clear enough to where you do not have to individually manage settings and type in every single person's name in your blocked or not blocked lists. It seems as though anytime you want to change something in your privacy settings, it's going to take a while, and that can be very annoying.

7. Categorize picture tagging
As if picture tagging wasn't a chore in itself, the fact pictures can not be tagged in separate groups can be very annoying. Since most of us on Facebook like to limit our profiles from certain friends, coworkers, or family members, it's kind of annoying that you can't also group and tag your photos in some way so that they can be under different categories. That would save a lot of time and frustration when uploading and tagging pictures.

8. Block applications, event invitations, etc.
We've all been all that point when our notifications are nothing but event invitations, invitations to join a certain cause, or to join a certain group. If you are one of the ones that finds this annoying, you can modify your settings so that you don't receive a notification whenever you receive one. It would probably just be less annoying to be able to block all invitations in general, because even if you modify your notifications, the events and invitations will still show up on your home page.

9. Don't accept just anyone
While some people feel bad denying friend requests with people they don't know or would just not rather catch up with, being choosy with who you decide to accept as a friend is pretty important. Accepting someone just because you don't want to feel bad or don't want them to keep requesting you is going to annoy you more when you can't stand to see their walls, status updates, and photo albums. So, keep it easier on yourself and don't accept people you'd rather not having anything to do with.

10. Delete your account
If you really are at the breaking point with Facebook and find yourself so annoyed with it all the time, there are two options. You can either limit the amount of times you login per week so that you dont have to be bothered and annoyed by people's pictures, updates, and wall posts, or you can delete your account all together and never worry about Facebook annoying you again.

Until next time...

Good Luck and Good Following!!!!!!!

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The US Food and Drug Administration (FDA) announced on Friday that it will begin monitoring and investigating the services offered by consumer-focused, personal genomic testing companies. In warning letters to five companies, the agency notified company executives that their tests are considered medical devices and therefore must be federally approved as safe and effective. None of the companies have submitted their products for approval, according to the FDA. Further, the agency contends that personal genomic tests as medical devices must be “analytically and clinically accurate so that individuals are not misled by incorrect test results or unsupported clinical interpretations." Previously, the agency hadn’t definitively classified the tests as medical devices. However, the agency has become increasingly concerned that results from the tests may ultimately be used for diagnostics and prognostic purposes by various entities including insurance companies and employers.

The companies that received letters on Friday included California-based 23 and Me (backed by Google Health), Navigenics and Illumina and Knome of Cambridge, Mass.; and deCode Genetics of Lake Barrington, Ill. The FDA sent a similar letter in May to Pathway Genomics of San Diego, after Pathway announced it intended to sell its tests through Walgreens drugstores. Many industry insiders believe that the proposed Pathway Genomic-Walgreens was the proverbial “straw that broke the camel’s back” which prematurely forced the agency to take regulatory action.

The letters deal with specific tests marketed by: 23andMe Inc., deCODE Genetics, Illumina, Navigenics and Knome Inc. FDA asks each of the companies to contact the agency to make arrangements for submitting their tests for review. 23andMe and Navigenics and DeCode Genetics, sell tests that scan a person’s DNA, looking at genetic variations that can suggest whether a person is at a higher or lower risk of getting certain diseases like cancer or diabetes. Illumina sells DNA chips that are used by some companies to do the DNA scans whereas Knome offers consumers a complete sequence of their DNA, which can be used to glean disease risk information. While 23 and Me is pushing back, deCode Genetics CEO stated that the company will work with the agency to legitimize its tests as part of “standard medical care.” Knome, whose whole genomic sequencing platform will ultimately supplant the services offered by 23 and Me, Navigenics and Pathway Genomics, has also expressed a willingness to work with the agency.

Despite the existence of theGenetic Information Nondiscrimination Act (GINA) enacted in May 2008—which ostensibly would shield patients from potential “genetic discrimination”—many privacy and medical information advocates fear that loopholes will allow insurance companies and prospective employers to abuse the results from personal genomic analyses. To that end, GINA does not cover life, individual disability insurance, or long-term care insurance, and the potential for genetic discrimination still exists in these areas. For example, a person at genetic risk for developing Alzheimer’s could be denied long-term healthcare insurance because Alzheimer’s patients have been known to live for long periods of time, and their care is costly.

Another legitimate concern raised by some people is ownership of the results of personal genomic analyses. Surprisingly, at present, it isn’t clear who owns or ultimately controls a person’s genetic information data after it is generated. For example, it is likely (but not certain) that a consumer who purchases whole genome sequencing services from a personal genomics company owns and controls his/her sequence data. Ownership and control of the information isn’t likely to be straightforward or easily defined until rules and regulations are crafted to clarify how genomic information is owned, stored, and accessed by individuals and third parties.

While companies like 23 and Me and their ilk aren’t pleased that FDA has finally classified their tests as medical devices, they had to know that regulatory oversight of the personal genomic testing business was inevitable. This is because the results from personal genomic tests have been and will continue to be used by various and sundry entities a diagnostic and prognostic tools.

It is obvious to almost everyone in the life sciences industry that there are huge sums of money to be made in the personal genomic testing space. Consequently, the last thing that personal genomics company executives wanted was regulatory oversight by FDA (it tends to interfere with business and profit margins). However, we all have experienced first hand what happens when companies are allowed to operate in the absence regulatory oversight.

Hat tip to FDA for finally taking a stand on this important issue!

Until next time...

Good Luck and Good Job Hunting!!!!!!!!

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I want to state at the onset of this post that I am an ardent supporter of online patient communities because I believe that the exchange of information between people who suffer from the same or similar medical conditions is vital to their health and well being. Further, I believe that social media will force physicians, the medical community and the US healthcare system to become more transparent, open and interactive. That being said, in this past Sunday’s New York Times, Natasha Singer wrote an extremely revealing article about some possible, unforeseen “side effects” associated with membership in online patient communities.

The reason why these online communities exist is for patients to commiserate with one another and exchange personal stories and medical information. While personal stories may be emotionally satisfying for patients, it is their medical information and demographic data that is extremely valuable to drug makers. To that end, many online patient communities inform their members that they reserve the right to share information and data for research purposes. And many of them do!

To be clear, I am not suggesting that the people who create or manage online patient communities have avaricious, nefarious or otherwise unsavory ulterior motives for the medical and patient demographic data that they collect. However, these communities need to generate revenue in order to stay in business and drug makers are willing to pay for access to it.

According to Singer, the popular PatientsLikeMe community admits that it sells health and medical data gathered from member profiles (but with certain identifying information removed) to pharmaceutical companies and others for scientific and marketing research purposes. Further, a large number of unbranded “disease awareness” pages have recently begun to appear on Facebook and YouTube. In her article, Singer contends that “drug companies may pay people to moderate patient forums [in the community] or give testimonials but might not prominently display that fact to participants. Other sites collect consumer health data to help drug makers’ aim at specific kinds of consumers, using psychological cues.” At a medical communications meeting that I attended several years ago, a MySpace sales rep freely admitted to me that it allow pharmaceutical companies to mine profile data in order to develop targeted marketing campaigns. Is Facebook next?

Finally, while the Health Insurance Portability and Accountability Act of 1996 (HIPAA) restricts the way health care providers use and disseminate patients’ information, consumer health websites and online patient communities aren’t subject to its privacy provisions. In other words, there are no regulations guiding the privacy and use of medical information and data collected using social media tools! Essentially, this means that the persons who run online patient communities can do pretty much whatever they like with the medical and personal information that they collect!

As I stated at the beginning of the post, I am a social media enthusiast who subscribes to the notion that if used correctly, social media can help to better inform and improve the lives of people suffering from various disease. That said, I also believe that people who choose to participate in online communities MUST be fully informed about the potential uses of the personal information and data that they contribute. Until the Food and Drug Administration provides some regulatory guidance on the use social media to collect and disseminate medical information patients will be at the mercy of the entities that run online patient communities. Let’s hope that they see fit to “do the right thing.”

Until next time...

Good Luck and Be Careful What You Say Out There!!!!!!!!!

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Advances made in DNA sequencing technology and genomic analysis has lowered the cost of sequencing a genome from millions of dollars a decade ago to less than $500 today. And, because of this, there are a growing number of companies that are willing to quickly and cheaply sequence and analyze your DNA. While this may be medically beneficial and appealing to some, it may not be for everyone. Moreover, and perhaps more importantly, who will control access to and insure the privacy of your genetic information if you choose to have your genome sequenced and analyzed. 

Alan McHughen, PhD, a molecular biologist and Professor of Botany and Plant Sciences at the University of California-Riverside, who has previously written about privacy and access to personal genomic data, wrote an article for BioJobBlog that explores the ramifications and possibility of DNA identity theft in the future. Also, he has written a book 'Pandora's Picnic Basket; The Potential and Hazards of Genetically Modified Foods' to refute the myths and explore the genuine risks of genetic modification technology

Genetic Privacy

By Alan McHughen

For just $399 (plus shipping and handling), the scientists at 23and me.com will scan your complete genome. The DNA analysis reports on 118 different medical and health dispositions, your maternal and paternal ethnic ancestry, and a curious bunch of genetic trivia concerning your persona (is your earwax sticky or flaky?). All you do is pay the money and spit into a collection tube; they extract your DNA from the spit and look for half a million single nucleotide polymorphisms (SNPs) scattered throughout your genome, including many in or near genes associated with particular traits. Other companies offer similar services. For example, Decodeme.com charges $985, but catalogs twice as many SNPs, and you collect your DNA with a cheek swab.

Alternatively, if you don’t need the complete genome scan but are curious about specific medical conditions or family lineage, you can get less expensive gene tests from an increasing number of companies willing to take your money and DNA sample in exchange for the genetic information their scientists reveal. If heart disease runs in your family, you may either relieve or exacerbate your anxieties by shelling out $200 to have a cardio scan for relevant genetic predispositions. Or, for as little as $99, a man can have his Y chromosome probed to confirm his place in the family patrilineage, and possibly connect to ancient and famous princes or pirates.

These genetic information services, with prices now well into recreational and hobby budget range, provide the most personal, private — and unchangeable— information possible about you. The sinister side of this fascinating field is all too often overlooked—it can reveal your most intimate genetic details to strangers and nosy neighbors. While the various testing labs assure confidentiality, there is little to no control over personal genetic information. In the US, anything you discard is salvageable by anyone else, and your trash can become another’s treasure if it carries blood, saliva, hair, semen or any other DNA-laden bodily secretions.

While we worry about identity theft, personal financial or other private information, our uniquely personal information is up for grabs. The Genetic Information Nondiscrimination Act (GINA) of 2008 offers some protection, but it is limited to employment and medical insurance issues. GINA does not protect your genetic information from being abused by life insurers. Or nosey neighbors. 

Genetic privacy raises a whole spectrum of social, ethical, legal and medical issues. Suppose your neighbor salvages your trash and has your DNA analyzed. This local gossip then shares the juicy news that you have a “higher than average predisposition” to, say, alcoholism. Soon, everyone in the community shuns you as a latent alcoholic, and you have no idea why. The community knows more about your genetic makeup than you do. And, because they don’t know how to interpret statistical language such as “a higher than average predisposition”, those conditions may easily be exaggerated into probabilities, if not certainties.

If people have a right to know their own genetic information, they have the obverse right to NOT know. People can choose to remain ignorant about their genetic makeup. Consider, for example, Huntington’s disease (HD). This death sentence is one of the few health conditions almost due to genetics, and the DNA assay has been available for years. Curiously, most people at risk, i.e., those with HD in their direct lineage, choose NOT to take the test; they prefer not to know until (or if) symptoms appear. What happens when the local busybody lets the cat out of the bag on HD? Word will get around and the at-risk person will inevitably find out, if only by the ‘different’ treatment by neighbors, thus obliterating the exercise of their right to remain ignorant. Whether the test result is positive or negative on HD is immaterial at this point, the rights will have been violated. The DNA test for HD is currently more elaborate than the simple SNP analysis, but because SNPs associated with HD are being reported, it’s only a matter of time before they come generally available.

Perhaps you’ve suspected the woman down the street had a child from an adulterous one night stand a few years ago, and the cuckold husband remains a doting, if clueless, dad. Now, with just $89 (including overnight FedEx delivery!) and a little misdemeanor creativity, well within the standard ethical bounds of busybodies, you can satisfy your suspicions with a surreptitious and discrete paternity test. And, to provoke some real excitement in your sleepy small town, show the results to the husband.

A few minutes of thought and discussion generates many other issues and examples of the precarious security of personal genetic information and identity, and the potentially dire consequences of genetic information getting out. Society is yet to discuss the privacy issues surrounding genetic identity as vigorously as we have with personal financial or medical records. It’s getting late. Do you know where your DNA is?

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